Northern Ireland Assembly
Michelle O'Neill (Sinn Féin)
My Department already provides considerable support to the commercial and amenity horticulture sectors.
College of Agriculture, Food and Rural Enterprise (CAFRE) development advisers work closely with horticulture growers. They provide business support for vegetable, protected crops, top fruit, soft fruit and amenity horticulture crops, including ornamental crops and cut flowers. They deliver training, knowledge and technology transfer, and business development planning support to the horticulture industry. CAFRE staff also offer support through the provision of benchmarking and business development packages.
Recently, my Department assisted the top fruit and the potato sectors to achieve recognition under the EU protected food name scheme. New season Comber potatoes/Comber earlies and Armagh Bramleys have achieved protected geographical indication (PGI) status under EU law.
DARD supports the growth and development of the agrifood sector through the implementation of the rural development programme. One element of that is the EU agricultural and forestry processing and marketing grant scheme. To date, the Department has paid £5·03 million to support horticulture related projects under that scheme. The processing and marketing grant (PMG) scheme is open for applications until 24 February.
Representatives from the horticulture industry had the opportunity to input to the list of items included under tranche 3 of the farm modernisation programme. They are also included in the consultation process. A range of horticulture related items has also been supported in previous tranches of the programme.
The Department supports co-operation and collaboration within the horticulture industry. I recently attended a meeting with the Horticulture Forum and gave a commitment to ensure ongoing support for it. In addition, DARD, in conjunction with the Countryside Agri-Rural Partnership, manages the supply chain development programme. That programme supports growers working together to improve their supply chains.
David McNarry (UUP)
I thank the Minister again. I did not need to ask her for a plug for Comber spuds, and I thank her for recognising that that status has been given to that particular part of the industry. It greatly advances our agricultural food business in that area. Can she say specifically, if not now, perhaps in written answer, what promotion and marketing tools are available from her Department to the market growers and gardeners?
Michelle O'Neill (Sinn Féin)
I outlined in my initial answer some of the areas of support that the Department provides. However, I am happy to write to the Member and give him more detail on the ins and outs of it. The processing and marketing grant scheme has been very beneficial to the sector. I am happy to give the Member more detail on that.
Debate resumed on amendment to motion:
Which amendment was:
At end insert
“which should consider all options for increasing organ donations and carrying out a clinical ethics consultation on the introduction of an opt-out scheme.” — [Mr M Durkan.]
Sue Ramsey (Sinn Féin)
Go raibh maith agat, a Cheann Comhairle. [Interruption.]
I accept the Minister’s apology. I welcome this debate on organ donation. In contrast to yesterday’s debate, in fairness to DUP Members, they are not going to divide the House today. This is a very important motion.
We need to recognise, as I am sure the Minister will do so, the huge gift that those who donate their organs give to people across this island. Due to organ donation, there are many men, women and children, not only across this island but across the world, who have received the opportunity of a new life. As the proposers of the motion and the amendment touched on, the impact on people who receive an organ donation cannot be underestimated. The impact on those who take the ultimate step of allowing the organs of their loved ones to be donated should not be underestimated either.
There are a lot of issues around this subject in society. The proposer of the motion highlighted some statistics from across the world. I am in favour of organ donation, but I am not in the position in which a loved one of mine has just died. So, when we look at the opt-in and opt-out issue, we also need to look at education and how we let people know at such a vulnerable time in their lives that being involved in organ donation gives the gift of life or the gift of a better life to others. It is important that we recognise the human aspect involved.
The proposer of the motion mentioned the thousands of people who are on the organ donor register in the North. However, when you compare that with statistics across the world, and I thank the people from Research and Information Service for the information they gave us, our rate of registration is probably one of the lowest. We also have people who genuinely, for a number of reasons, do not agree with organ donation. As I said, there has to be a balance between allowing people to grieve after suffering such a traumatic experience and allowing them to take part.
Jim Wells (DUP)
Does the Member accept that the vast majority of people who do not sign up for organ donation have no great moral or philosophical problems with it: they just never get round to doing it? There are very few people in the United Kingdom or the Irish Republic who have a moral problem with donating their organs. It is because of apathy that they do not sign up. Therefore, surgeons day and daily are dealing with people who have perfectly good organs that they cannot use because those folk never got round to signing up.
Sue Ramsey (Sinn Féin)
I agree with Mr Wells. Organ donation is not a discussion that we have in general with our families. People do not say, “Tonight I am going to discuss with my family what they want to happen to their organs when they die”. A lot of people do not like to talk about death.
The other issue is that, unless we have that conversation and start that education process, we will be faced with this problem year in and year out. If one of my loved ones died, I would be unsure of what they wanted, so I would be afraid to make a decision. So, it is right that we have that conversation, strategy and education process and that we start them at an early age.
Organ donation has had a bad time over the past number of years. In this jurisdiction, we have had the organs retention inquiry. So, some people shy away from it now. If we start the conversation about organ donation earlier, it will become part of everyday life and will not be something that people do not want to talk about.
Sue Ramsey (Sinn Féin)
Probably, but there are a multitude of reasons. If you look at the motion, the issue is about looking at all of these scenarios in their context. People in Spain were given the opportunity to opt in or opt out and that did not necessarily make a difference. However, employing people to deal with families and act as a family liaison officer at that critical and crucial time has increased organ donation in Spain by, I think, 30%.
Allowing that to happen was one step, but it was not the biggest step needed. Other issues and factors needed to come into play. We need a holistic approach at an earlier age. When we spoke about cancer 10 years ago, it was whispered. Now that we have had education and information, people are talking about the survival rate for cancer. Cancer is no longer —
Joanne Dobson (UUP)
I thank the proposers for bringing the motion to the House to enable us to debate an issue that is very close to my heart. I speak not only as an MLA but as a mother of a successful kidney transplant patient. Three years ago, my youngest son, Mark, had a kidney transplant. If Members will indulge me for a moment, I would like to speak briefly about his story.
Mark suffered from kidney disease since he was born, but when he was 13 years old he entered renal failure. He was told that he would need to undergo a transplant operation within one to three years. At home, we had always lived with Mark’s kidney disease and adapted our lives around it, but I cannot relay the emotional shock it delivers to a family to hear that your son needs to undergo life-saving surgery at such a very early stage of his life.
However, Mark is one of the lucky ones. He waited for 10 months for a successful donor organ to be found, and in February 2009, aged 15, he underwent the five-and-a-half-hour overnight operation at the Royal Hospital for Sick Children. We do not know who the donor of Mark’s kidney was, and we probably never will. Even so, we thank their family every single day for giving Mark the gift of life. As they endured the indescribable grief of losing a loved one, through donating an organ they gave the selfless gift that enabled us to have a healthy and fit son who is able to enjoy life to the full.
Since his transplant, Mark and I have visited and become friends with countless dialysis patients and their families to give advice and to talk about his experience at what can be for them an extremely traumatic time. I think particularly at this minute about Justin and Sharon Weir, constituents of mine from Donaghcloney.
Patients struggle daily with the physical effects, mental trauma and considerable financial loss, which for many comes from being unable to work. The end result is low self-esteem and the stressful cycle of enduring what seems like endless medical treatment. It is heartbreaking to watch patients go through the daily routine of being on dialysis, with the long journeys to hospital and the never-ending wait for the phone to ring with the news that an organ has become available.
As a family, we endured that wait, and nothing quite prepares you for the elation of finally receiving that call. However, I know many patients through our charity work who are into their second decade waiting to receive an organ. I think in particular of one such patient, a colleague of mine, William Johnston, from Bangor, of the Northern Ireland Kidney Patients’ Association. That highlights the extreme importance of increasing organ donor numbers.
The House and, specifically, the Health Minister must take all necessary steps to increase the number of available organ donors and to build on the hard work and tireless dedication of so many local people who give freely of their time to promote organ donation. That includes the work of the charities of the Transplant Forum and the Public Health Agency.
Joanne Dobson (UUP)
We must be absolutely certain that the steps we take will not damage their vital work or lead in any way to a loss of trust among the public in relation to the donation of organs.
Last Friday, ‘The Economist’ published an article on that issue, which highlighted a staggering statistic: although 90% of the British public approve of organ donation, only 30% have signed up. In our local trust, I am aware that we have regional clinical leads and nurses who are specifically trained in organ donation, and that each trust has an organ donation committee in place. That is a start, but we must build on that important work if we are to see organ donor numbers rise dramatically. At the moment, the numbers are rising, but far too slowly.
Last year, as a newly elected MLA, I was proud to launch here at Stormont the Transplant Games, which were held in Belfast. The publicity generated from the games enabled Northern Ireland to reach the very significant local milestone of half a million donors on the register. However, as I said, we need to do more to maintain that momentum.
As I speak to patients waiting for transplants, transplant recipients, clinicians and organ volunteers, I continue to hear the incredibly persuasive argument for more and more trained transplant co-ordinators to operate at our hospitals and local health facilities. Through their specialised training, they can speak directly to families going through an extremely traumatic time to discuss organ donation and how the death of their loved one can pass new life on to another.
There are 288 local people currently waiting for a transplant. No one knows if or when they will join those numbers. I urge people to ask themselves one question: if you are prepared to receive an organ to save your life, are you prepared to give an organ to save someone else’s? A fact that most people do not know is that —
Kieran McCarthy (Alliance)
If ever there was a reason for people to donate organs, Jo-Anne Dobson’s story, which we heard today, is one. We thank her very much for sharing that with us. I wish her every success in her work as she goes along, and that her son will make a good life for himself, as I am sure he will. His family must be proud of him.
I thank the Members for bringing this important issue to the Assembly, and the amendment, which we support.
We can all play our part in the promotion of organ donation in Northern Ireland. As Jo-Anne told us, 288 people in Northern Ireland are awaiting the life-saving gift of an organ, which, if received, could help them to live with their loved ones for many years. I have enormous sympathy and hope for all those who find themselves in that position. By highlighting the issue in the Assembly today, I hope that progress can be made and, sooner rather than later, many more organ donors will come forward, thus saving the life of as many patients as possible. I pay tribute to all the medical staff involved. I am sure that Jo-Anne would agree that the doctors, consultants and all the people involved in getting Mark back to health have to be congratulated, and we give them all the support that they deserve.
Northern Ireland has always been regarded as a region where people are caring and generous. I have no doubt that, if given all the information on safeguards, dignity, etc, our people will continue to give. If the motion is passed, and I have no reason to believe that it will not, and a review is undertaken with all scenarios taken into consideration, I am sure that our people in Northern Ireland will respond positively.
Presently, as I understand it, the donor card is the main method of getting people to sign up. It has worked satisfactorily until now, and we must thank all those government organisations that push for organ donation through their correspondence. I am sure that Members know what I am talking about. When you get an application form for a driving licence, for instance, you have the opportunity to sign up to be a donor. We are very grateful for that.
The amendment calls for the consideration:
“of all options for increasing organ donations”.
It also refers to the “introduction of an opt-out scheme”. I can go along with that, as long as every possible precaution is taken. There can be absolutely no room for error. It was, I think, Sue Ramsey who mentioned an incident that I recall from a number of years ago. After the unfortunate deaths of their babies, some parents discovered to their horror that, without any discussion, debate or permission, the children’s organs had been stored for future use. That caused an outcry. Sue mentioned that during the review of organ donation at the time.
Jim Wells (DUP)
Does the Member accept that there is a world of difference between the organs of a child being taken for experimentation without the parents being consulted and someone voluntarily giving their organs to enhance the life of someone else after their death? I do not think that we should muddy the waters by trying to compare the two. They are totally different.
Sue Ramsey (Sinn Féin)
As the Minister is here, I want to mention the process of education. Unfortunately, when the donation or retention of organs is mentioned, we think of the bad issues. Education of the public is important, and I agree with the Member’s intervention.
Kieran McCarthy (Alliance)
I just mentioned that incident because the last thing that we want is for people to suffer any more than they already have. I know that, for the parents, it was like their baby was dying for a second time, and some of those affected came to me. We must take every precaution, regardless of what direction we take. We want organ donations to increase, but every precaution has to be taken. The situation that I described must never happen again, as it would make people uneasy, suspicious and more likely simply to say no to organ donation. I am against such horrendous situations, and I would be totally against any plan to remove organs without the family’s permission.
As the Deputy Chair of the Health Committee said, in Wales, the result of consultation on the opt-out system is anxiously awaited, and, after that, the publication of the report. Our population could digest the outcome of those and make better decisions.
I pay tribute to the ‘Belfast Telegraph’ for its Sign Up, Save a Life campaign last year. Now, the number of people signed up to save a life here stands at over 0·5 million. That is a fantastic result, and I appeal to everyone to continue with that.
In conclusion, I support the motion and the amendment, and I hope that the review will be positive and help to save the lives of people who depend on a donor to remain with their families for many years to come.
Gordon Dunne (DUP)
I welcome the opportunity to speak on the very important matter of organ donation. It is a very sensitive issue, and it is right and proper that we have a mature and sensible debate. It is welcome news that organ donation is on the increase throughout the United Kingdom. However, there is still room for improvement. The reality is that transplants save lives.
Organ donation is a very delicate issue, and we need to take great care not to increase the trauma of already grief-stricken loved ones when death comes to a family. Sadly, the statement rings true that in the middle of life, we are in death.
Obviously, one major element of a review of organ donation would be the possibility of introducing an opt-out system, which Wales is seeking to introduce. I have reservations about presumed consent on such a sensitive issue as organ donation. I believe that donation should be a gift, not a duty. Doctors have also raised concerns about the slack definition of death required to harvest organs. We must be cautious and ensure that the need for organs does not compromise the care of those who are critically ill.
There is also concern from Churches and other organisations over presumed consent of organ donation. Those concerns need to be taken on board in any review of organ donation in Northern Ireland. The Archbishop of Wales, Dr Barry Morgan, has warned of an opt-out system undermining the positive image of organ donation. He stated:
“Giving organs is the most generous act of self giving imaginable but it has to be a choice that is freely embraced, not something that the state assumes.”
One of the most effective measures in improving donation rates is to promote public awareness of the importance of organ donation. As with many public health issues, more could be done to educate our young people on the subject. That could be done in schools and in further and higher education institutions, but it could be extended to workplaces and community organisations. We should be doing more to sell the benefits of organ donation and make known the dangers of not thinking seriously about it, which often happens as a result of a lack of knowledge.
Many do not think seriously enough about organ donation during their life, and I am sure that it is only when people find themselves in a position of critical need that they begin to think seriously about it, and then it can often be too late. The profile of the current donation system and organ donor register could be greatly increased, and there should be greater public awareness of the register right across the age profile of people here. The current Carry the Card campaign could be evolved and improved, having become somewhat outdated. It should be more user-friendly and interactive, with greater use made of IT and mobile phone facilities, all aimed at reaching more potential donors and making donation more socially acceptable. A television campaign would go a long way to increasing that social acceptance. More could also be done to make transplants more effective. Northern Ireland has a particularly low conversion rate, which needs to be improved.
Organ donation is a complex issue. Any review should take on board all views and assess the benefits of a range of measures before taking any rash decisions, which could do more to damage public health than improve it. I support the motion and the amendment.
Mickey Brady (Sinn Féin)
Go raibh maith agat, a LeasCheann Comhairle. I, too, support the motion and the amendment. As Gordon said, this is a very complex subject. I have to say that it is something that I did not really understand a lot about until I read some of the information.
I have attended the transplant group at Daisy Hill Hospital, where there is a very good renal unit, which people from the Twenty-six Counties also access. I talked to people in the group. I have a school friend who had a transplant and takes part, very successfully, in the transplant games. I also had a colleague who donated a kidney to his father. However, organ donation is something that living donors should decide themselves to do. Where a family is put in a position in which they have to make a decision, obviously that decision becomes that much harder.
I did not understand a couple of things, although perhaps I have not yet heard the answer. I presume that, as they get older, people’s organs become less effective for organ donation. Therefore, I also presume that younger people are continually needed to sign up for organ donation, and age is a thing that I do not think that anybody — [Interruption.]
If I can make the point before Mr Wells gets up, because he might want to comment, I thought it a very magnanimous gesture for him to say earlier that he does not care what happens to his organs after he passes away. However, I am sure that we may find a few wee caveats in his will as to whom they may or may not go. I will give way.
Jim Wells (DUP)
Yes, not Mickey Brady. I do not think that that would be on the card. However, there are some of us who would like a transplant of his hair at some stage.
To return to being serious about this important issue, my understanding is that the liver regenerates. In fact, Dr Karl Partridge, who spoke to me this morning, got the liver of a 63-year-old, and it is functioning perfectly well and will last him a lifetime. Therefore, for some organs, no, it does not matter what age the person is, provided the liver is in good working order.
Mickey Brady (Sinn Féin)
I thank the Minister — the Member — for his intervention. Sorry; Freudian slip. I think that there was more concern about to whom your organs might not go, as opposed to whom they might. I will leave that there.
There are other issues. People who have had blood transfusions cannot subsequently give blood. I wonder whether there are issues around that, and I am sure that someone will be able to inform us about that later. It is certainly a very complex subject. I ask the Minister to consider that.
Although an opt-out system would put more people on the donor list, and should be supported, I think that the biggest problem is getting the next of kin to agree to transplantation, because tragic circumstances pertain at that time, particularly when relatives get bad news, usually as a result of an accident. People may not be in the right frame of mind at such times to agree to donation.
The relevant point was mentioned that Spain has introduced a system of having transplant co-ordinators in every emergency hospital. That could happen at trauma units here. Transplant committees in trusts have also been mentioned, and that is obviously a great step forward. Those people are trained in grief counselling to talk to relatives of donor-card holders. As was mentioned, Spain introduced the opt-out scheme 10 years ago but saw only a modest increase in donations. However, since the new system was introduced, there has been an increase of over 30% in the number of organs for harvest. That is the kind of model that the Minister could look at to increase the number of donations, because it is a very sensitive and delicate subject. Obviously, the way forward needs to be treated sensitively.
Alastair Ross (DUP)
Irrespective of one’s views of the merits or otherwise of an opt-out system, we, of course, should — I think that this debate will — encourage a greater understanding of the issues. We should educate more people about the need for donations and ensure that the current system is made more effective and efficient. We should, of course, encourage those who wish to do so to carry a donor card but, more importantly, as other Members said, encourage them to talk to their loved ones so that they know what those individuals’ wishes are in the event of death.
I certainly encourage the Minister to examine how we can encourage more people to get on the organ donation register, but I also encourage him to investigate whether the present system is efficient enough and to ensure that we get a translation from potential organ donations to actual transplant stage. However, I have a number of concerns about moving towards a model of presumed consent, and I wish to focus my remarks on those. My colleague Mr Dunne said that it is about a competing argument between whether it is a gift — I listened to the moving speech by Jo-Anne Dobson about the gift of life — or whether it is a duty. I believe that moving towards a system of opt-out raises some serious questions about the power and the role of the state over the individual. One would have thought that some Members would have cherished the principles of the Magna Carta and the limitations of the state over the individual and shown more resistance to moving towards a position in which the state assumes ownership of people’s organs. It cannot be stated in strong enough terms that presumed consent is not actual consent. It is very important that we take note of that.
Jim Wells (DUP)
Aligned to that would be a register, held in Northern Ireland, which anyone who had problems with presumed consent could join to make it absolutely clear that their organs could never be used in any circumstances. Surely that is the safeguard, provided it is properly advertised and people are aware of it. That would prevent the state from assuming ownership of organs, and that, surely, must be worth considering for the future.
Alastair Ross (DUP)
I thank the Member for his comments and, indeed, for his balanced tone, but I would not be confident that an individual’s failure to opt out of the system should be taken as informal consent. In fact, we could not be sure that it is not because of a lack of understanding of the system, the policy or the process. We cannot take that as consent, which is a key issue. Indeed, I think that we could place additional burdens on grieving family members rather than removing it.
I turn to some other issues that have been mentioned. First, the vast majority of people support a move to an opt-out system. I read the BMA’s remarks, which quoted a figure of 90% of people being in favour of presumed consent.
It is reasonable to assume that, if that were the case, those people would have no difficulty in carrying donor cards. If they do not carry them, we have to find out why. What can we do to encourage those individuals who support that system to carry donor cards? If we could encourage them to do so, there would be no need to move towards a presumed consent model.
It is also important that we challenge some of the statistical presumptions that we have heard. There is an assumption, which I heard during the debate, that moving to an opt-out system would automatically increase the level of organ donation. I cited the two examples of Norway and Sweden, where, although there is an opt-out system, there are lower rates of donation than here in the United Kingdom. I listened to the point that Ms Ramsey and Mickey Brady made. They are correct: often, Spain is cited as having a higher level of donation. People credit that to an opt-out system, but the reality is much more complex. Closer examination reveals that Spain’s higher rate has less to do with the legal framework in which it operates and more to do with the donation and retrieval system, a high level of public awareness and, indeed, some of the measures that have been put in place, to which the two Members referred. Indeed, the 1979 legislation, which was introduced to move towards presumed consent, lay dormant for many years, and no opt-out register was ever created. The real impact was those key organisational changes in the late 1980s.
There are also questions about whether moving to an opt-out system would deliver the anticipated outcome. The former Prime Minister Gordon Brown established the organ donation task force in the final years of his Government. Its report was published in 2008, and it made absolutely clear that presumed consent was unlikely to increase organ donation in the United Kingdom and, indeed, that it risked diverting substantial resources. It would have cost around £45 million to set up and many more millions of pounds in subsequent years. The task force feared that it would divert money from other areas — money that could be used to promote organ donation.
Even more significantly, the task force’s members came to the review of presumed consent with an open mind. They were happy enough to go along with moving towards that system. However, after examining the evidence, they determined that the benefits of moving towards presumed consent were less obvious and that the entire issue of donations was a multidimensional one that could not be taken so simply. Crucially, that task force reached clear consensus, which was that an opt-out system should not be introduced and could impact negatively on donation rates.
The other very important issue that the Assembly must look at is that of potential donors becoming actual donors, which other Members also mentioned. NHS Blood and Transplant documented in its 2010-11 activity report that, in some cases, around 90% of potential donations were lost because medical staff failed to approach family members for consent or authorisation, or because other criteria were not met. That is an alarmingly high rate. We can, therefore, confidently deduce that there are massive inefficiencies in the process used by health authorities throughout the UK.
Alastair Ross (DUP)
If those inefficiencies were improved, even by a fraction, there would be no need for a move towards presumed consent.
The Minister should examine all possibilities, and, of course, that is his responsibility. However, I urge caution and ask him to resist moving towards a position in which he legislates for the state having further controls over individuals and a system not proven to improve donation rates.
John McCallister (UUP)
Contributions to the debate from around the House have been very interesting. At least, there is one common thread: all Members agree that we need to do something so much better.
Mr Wells, in his opening remarks, set out some sad statistics and facts. Every year, for example, 17 people are lost. We heard a moving story from my colleague Jo-Anne Dobson about her very personal experience with her son Mark.
Of the issues on which I want to focus, the principal one is ensuring that whatever happens, the wishes of individuals are met and respected. Sadly, that does not happen at present. The fact is that the families of 40% of people who carry donor cards subsequently refuse to let the organs be used. That is a pretty alarming statistic, notwithstanding the extremely difficult times in which such decisions are made. All of us in the Chamber and beyond — those who watch or listen to the debate later — should always be thinking about having that conversation with their families. That point was made by other Members, but it needs to be reiterated. People must make sure that their families, their next of kin and their loved ones are in absolutely no doubt as to what their wishes are. Carrying a donor card may not be enough when the percentage of organ donors is 40%. People should have that discussion with their loved ones so that there is no question of their views on donation. I hope that it never happens to anyone — no one ever does — but you never know; therefore we want our views to be well known to those who have to make that decision.
The debate about presumed consent or the soft opt-out system was made strongly by Mr Wells. We need that radical rethink so that we can up the numbers of organ donors. We also need to do all the things that Mr Ross and Mr Dunne talked about, such as looking at the number of transport co-ordinators and examining where the system is working well and where it is falling down. A proactive review by the Department will be useful.
Alastair Ross (DUP)
I thank the Member for giving way, and I am sure that he will come to my other comments later. Does the Member agree with me that, irrespective of one’s view of opt-out or opt-in systems, the first stage should be making sure that the current voluntary system is efficient and effective? Does he further agree that, if that fails, we can then have a conversation about taking the dramatic step of moving to an opt-out system? The first step should be to make sure that the current system is efficient.
John McCallister (UUP)
Thank you, Mr Principal speaker is in charge of proceedings of the House of Commons in..." class="glossary">Deputy Speaker. I do not think that anyone is overly precious about how we how do it, as long as the system works and we up the number of donors. Mrs Dobson said that 90% of those surveyed in the UK believe in organ donation, yet only 30% of us are on the register. That is a huge gap that needs to be filled, and we need to look at how we can do that.
I do not accept Mr Ross’s point that an opt-out system would somehow be evidence of the great state coming in. At the risk of evidencing unionist unity, I share some of his civil libertarian views; however, I do not see the state coming in and somehow taking charge of people’s organs. It is not as though the state is saying, “Thank you very much, we will have a couple of kidneys from you and something else from you.” That is not what would happen. Mr Wells’s liver might be in better shape than those of some other Members. [Laughter.] However, that is a very different debate. I do not agree with Mr Ross’s point, and I do not see that the state would be overstretching itself if we were to move to a soft opt-out system. The rights of every citizen should be respected.
Sue Ramsey (Sinn Féin)
I said earlier that education is key, and a number of other Members mentioned that. Years ago, there was a rumour that if people carried an organ donor card, it was less likely that additional steps would be taken to save them if they were involved in a serious accident. That is why education is key.
John McCallister (UUP)
I hope that it was just a rumour and that people would do all that they could to save someone’s life. It goes back to the point about respecting the individual’s wishes to donate or not.
We need to make it easier for people to get on to the organ donor register, and we have tried to do that by including organ donation consents on driving licences. It is one of the things that people tend to put off like making a will or doing that DIY job around the house. It goes on for months and years until the wife gives you such a hard time about it.
John McCallister (UUP)
We need to make it easy. I support the Minister’s review. I also support the motion, the amendment, which was well worded, and the taking of all steps, including looking seriously at the introduction of a soft opt-out system.
I welcome the opportunity to participate in such a hugely important debate. One could only be impressed by the personal contribution of Jo-Anne Dobson about her son Mark.
Unfortunately, 1,000 people died last year on the National Health Service waiting list for organs; a further 1,000 people risked their lives to donate a kidney. They were so desperate watching their loved ones die slowly that they chose to take the risk of major surgery themselves. When dramatic and tragic statistics such as those demand that more can be done, more should be done.
The SDLP acknowledges that, since 2000, because of the hard work of healthcare professionals, there has been a consistent rise in the number of people registering to become a donor. There has been a subsequent continuous rise in organ donations. We also want to pay tribute to the families of people who have donated their loved ones’ organs. Jim Wells gave a prime example of a young man who, having lost his life, contributed to so many other people’s lives.
I have spoken to many people in my constituency whose lives have been saved and whose quality of life has been improved dramatically, and they are deeply grateful to the donors for that. The organ donation task force set a target of a 50% increase in donation rates between 2008 and 2013, as Alastair Ross mentioned. He acknowledged the very good work being carried out by the Minister, the Department, the Public Health Agency, health trusts and organ transplant teams in striving to meet those targets in recent years. A recent BMA report raised two key issues about the 50% target. The first is that current measures are not on track to bring about that 50% improvement, and secondly, that even when the 50% improvement is achieved, people will still die unnecessarily. It is obvious that more needs to be done to save people’s lives.
BMA studies showed that, when asked — we know that the facts are clear — 90% of people said that they would be willing to donate their organs in the event of death, but only one third of those people have got round to registering for that purpose. That leaves families in a difficult situation when asked about organ donation, because they do not necessarily know what their relative wanted to do. We also know that 40% of families who are asked to donate their loved ones’ organs say no. That means that 30% of potential donors never get the chance to donate.
Jim Wells (DUP)
The Member has hit upon one of the most crucial issues. Yes, 40% say no, but in other jurisdictions in Europe, when specially trained staff have been employed who have a way with dealing with people who are going through that trauma and can explain donation to them, it increases dramatically. I agree with Alastair Ross, in that the our first step must be to make certain that the best possible person is dealing with those families and can explain the situation to them. That may not be a consultant; it may be someone totally different, with bereavement training. That is what we need to tackle immediately to increase donor numbers.
I thank the Member for his intervention. The SDLP amendment asks the Minister to give consideration to improving the current donation rates, including an opt-out system of donation. Members talked about the system that is under consideration in Wales and also the Spanish model. We acknowledge that the BMA now supports an opt-out system as a means of maximising donation rates. Nevertheless, I take the point, made by Kieran McCarthy in particular, that we need to ensure that all ethical issues are addressed. It is clear that precautions must be taken and there must be no room for error.
As a number of Members said, Spain has the highest rate of donation in Europe. Incidentally, it used to have the lowest rate, so it has obviously done something right. There are several reasons for that, one of them being the introduction of an opt-out system, which has created a subtle and positive shift in attitude towards organ donation in that region. Donation becomes the usual rather than the unusual option for people and it eases the burden on families and medical staff when discussing organ donation. Anyone with a strong objection to being a donor will be able to opt out and their reservations and intentions will be clearly known.
In our current system, 90% of the population —
Mickey Brady (Sinn Féin)
I want to raise a point that has probably not been addressed. It is a logistical point, in a way, and is something that the Minister might take on board. I am not sure how to deal with it. The donation of organs would, presumably, delay a wake and a funeral, which may be a factor. It is something that people may not have thought about, but it has been raised before, and I just wanted to make that point.
Mickey Brady makes a fine point. In Ireland, we have a tradition of a wake. It is very important to families, who want to see the body at home. If the body is not at home, it is not a wake. The point is very valid.
The SDLP supports a proactive approach involving the medical profession, patients and the general public. That is how Spain transformed its donation issues. It is vital that we have investment in health service infrastructure, such as an increase in the number of ICU beds and, as a number of Members mentioned, it is also vital that we continue to train and provide specialist teams of donation advisers in main hospitals.
Edwin Poots (DUP)
First, I thank Jim Wells, Pam Lewis, Gordon Dunne and Paula Bradley for bringing the issue to the House. Jim Wells, at the outset, articulated very well why we need to do more. He set a very useful tone and context for the debate. It has been a very interesting and useful debate. We have heard diverging opinions within parties and the same opinion across parties. It has been a very open debate in which people have given their thoughts and views, and that is a good thing.
I come to the debate with some experience of these issues. Having lost my mother, who was in intensive care at the time of her death, I have some understanding of what families go through at that time. I know the trauma, challenge and disruption that may be involved in seeking to get permission from families for the removal of organs, when all that is in their mind is the loss of a loved one for whom they cared so much. At the same time, my mother had huge problems with her liver all her life. Would a liver transplant at an earlier point in her life have saved it? I do not know.
I also recall very well news coming through to our household about my father’s brother losing his kidneys. A number of years later, news came through to the home that they had found a suitable transplant. He received a transplant in the late 1970s and is still living to this day. I have to pay tribute to Dr Douglas and Professor McGeown, who were leaders in this field in the Belfast City Hospital. Many people are alive today as a result of their magnificent work.
I want to refer to another friend of mine, the sister of my best man. As a young student, she went off to a Third World country and picked up something. It did not seem to be that big an issue, but it did huge damage to her liver over a period of time. She received a liver transplant, but she was too low when she got it. She had deteriorated too much when she received it and, as a consequence, passed away around four months later. Her husband believes very strongly that, had she received a liver transplant at an earlier point in her life, she would still be alive. All those experiences guide me on this issue.
We have heard the argument about not taking something that does not belong to you. I believe that that is right. It is inappropriate to assume that you have consent to remove organs from someone’s body. At the same time, I am very clear that, if something happens to me, I want to give others the opportunity to live, as opposed to my organs being donated to the worms.
Organ donation is vital. Jo-Anne Dobson brought her personal experience to the debate, and it is good to see her son with us today. Few of us will have failed to notice the amount of press that the issue has received in recent times and the harrowing stories of those desperately in need of organs. I visited Libby Nash, who writes in the ‘Belfast Telegraph’ on a weekly basis. That young lady’s hopes that an organ is coming have been raised, I think, four or five times. She was set to fly over to England, and then the whole thing was dashed. It is certainly hugely challenging if you are living every day with the hope, “Could it be today?” Therefore, I am clearly of the opinion that we need to do more in respect of retrieving and transplanting organs to those who need them.
I should say that we have a relatively good story to tell in Northern Ireland. However, I think that the programme here needs to be as successful as others throughout the United Kingdom, and that has perhaps been the case in more recent years. Although the number of Northern Ireland organ donors is on the increase, I would like to see it increasing further. In Northern Ireland, for example, kidneys are the only solid organs transplanted. Patients requiring other organs are, therefore, referred to the appropriate centres in the UK or sometimes in the Republic of Ireland.
The live donor programme is something that we can be very proud of. In the UK, there is a very small, highly specialised programme of live liver transplants that is primarily for children. It is recognised that deceased donors are preferred. However, there are only around 20 of them in the UK. There was a live lung transplant programme, but that was discontinued due to the risk to the donors. In Northern Ireland and across the UK, we have live donor programmes for kidneys. The live donor programme has been a real success story in Northern Ireland, and that is largely down to the efforts of nurse Haslett. That very successful programme has seen the number of living donors rise from 10 in 2008-09 to 51 in 2010-11.
I heard how Mr Ramsey described the live donor programme, and I beg to differ on this occasion. Live donor transplantation is remarkably more successful than deceased donor transplantation. Therefore, I think that the opportunity to give a friend or relative the gift of life is a very worthy consideration. The percentage of kidneys still working after five years is 84% for live donor transplants, as opposed to 66% for deceased donor transplants. The percentage of kidneys still working after 10 years is 77% for live donor transplants, as against 58% for deceased donor transplants. In respect of patient survival, 83% of those who receive live donor transplants are still living after 10 years, whereas only 61% of those who receive deceased donor transplants are. So, live donor transplants are a huge success story, and we should be very proud of the work going on at Belfast City Hospital to achieve that. There is a three in 10,000 risk to donors, and the risks are largely due to bleeding, infection, blood clots, and so forth. So, we want to encourage the number of live donor transplantations to continue to grow.
It has been the case in Northern Ireland that some kidneys from deceased donors have been refused. Some 184 kidneys were offered to patients in Northern Ireland, but, for a variety of reasons, we were not able to receive them. That may sound like an alarming figure. There are quite a lot of good reasons why that should not have happened. Around 100 kidneys were refused for donor reasons, such as age, high-risk behaviour, history of cancer, etc, and the surgeons looking after the transplants, therefore, did not believe that they were suitable. We were not able to receive another 10 kidneys either because the recipient just was not ready for the surgery at the time or because there was the prospect of a live donor. Another 47 kidneys were refused for organ-related reasons such as damage, poor perfusion, or unusual or difficult anatomy. Around another 20 organs were refused because we did not have the operating space or the surgeons at the time.
I feel very sad about the fact that 20 people who could have had a kidney transplant in Northern Ireland in the past two years did not. To address those logistical difficulties, we are seeking to recruit two additional surgeons. That will hopefully ensure that we refuse fewer kidneys on the grounds that we do not have the logistical base to carry out transplants.
Mr Durkan mentioned North/South co-operation. We are part of a UK-wide system that is overseen by NHS Blood and Transplant (NHSBT). It enables our patients to benefit from organs that are donated in the rest of the UK and vice versa, which gives us a very large pool, and that is a good thing. Patients in Northern Ireland have the opportunity to join the ROI transplant register, but they cannot be on both registers at the same time. In addition, ROI retrieval teams may be available when one is not available in the UK, and a protocol is in place for us to use that resource. There have been only two occasions when the UK retrieval teams have not been available, and that was due to severe weather conditions.
In 2006, the organ donation task force (ODTF) report made 14 recommendations and indicated that we needed to increase organ donation by 50% by 2013. The current national increase is 31%, so the increase of 50% is progressive. We in Northern Ireland are considerably ahead of that. In Northern Ireland, work on the ODTF recommendations was taken forward by the local implementation group, which was chaired by the Public Health Agency and made up of commissioners, clinicians, the NHSBT, voluntary organisations and the DHSSPS. Immense improvements have been made in recent years, and each trust now has in place a clinical lead for organ donation, and there is a team of 14 specialist nurses in organ donation. In addition, a regional clinical lead has recently been appointed.
We recognise, in each instance where organs are donated, that that has been a tragedy for some family. We welcome the fact that, although there were only 21 donors in 2008-09, there were 40 donors in 2010-11. The increase being sought in the report has been met and exceeded in Northern Ireland. We need to get the rest of the United Kingdom to that position so that that large pool of organs that I referred to earlier might be available to us.
I applaud those who have been involved in that very effective work to date, and we could do more about donations from people who die from circulatory problems rather than from those who die as the result of some major trauma or accident. Although the ODTF reports have a further year to run before the target for increasing donations to 50%, the programme delivery board recently published its final report, which showed that the recommendations have been embedded into the normal business of the health service. Work is ongoing towards reaching the target.
Much has been made of what has happened elsewhere on the issue of opting in and opting out. In Spain, the opt-out model has not come about recently. It was introduced in 1979, and Spain has the highest donation rate in Europe. However, the evidence is quite clear that it is not purely due to the opt-out legislation being introduced. It was only after 1989, when Spain introduced a comprehensive, nationally organised donation system, that donor rates increased. The increase in donations could be attributed to the increase in public awareness and, indeed, the available funding.
Therefore, it is important that we consider all of the options to build upon the vast improvements that have already taken place in Northern Ireland. We need to recognise the improvements that have been achieved, and, in looking to how we proceed in the future, we need to take full cognisance of that. Wales has proposed an opt-out system and has just completed a public consultation on that. Although we recognise that we need to go further to all of the advances that we have made in organ donation in recent times, we need to have an open debate. I trust that this is one of the early points in the debate on whether an opt-out in Northern Ireland should be considered. It needs to be considered in the context of what has been achieved and what can be achieved without introducing legislation. That includes having greater public awareness and having the appropriate professional teams in our hospitals to advise people in a very compassionate and caring way about how they might best be able to help others to have life and how that can be a reflection on the person that they have just lost.
So, given that this is a truly sensitive issue, I think that we need to manage people’s expectations in a way that means that, for people who are desirous, should something unforeseen happen, their relatives can give life to others after that tragedy in their life. We need to make every effort to ensure that we maximise the numbers that are doing that, and it will be a course of work for us to continue to discuss how we can achieve that in the coming months.
I thank colleagues from across the House for their contributions to the debate this evening. As Jo-Anne Dobson illustrates, when an issue such as this touches a family, it does so in a very real and serious way, and I commend Jo-Anne for using the platform that her seat here affords her to keep the issue on everyone’s agenda. As the Minister points out, it has touched us all. I am sure that I am not the only one in this House who has had to confront the reality of making an informed choice in a less than clear situation. I have done so not once but twice in recent years in the case of my own parents in the Republic.
This is a sensitive debate, but it is an exceptionally important one. To Alastair Ross’s credit, he has raised the basic issue at the heart of the debate, which is ultimately about competing rights and responsibilities and about the extent to which the state can and should have an involvement in the collective well-being of everyone in it. It is a debate about whether we consent to being part of a jurisdiction conditionally or whether we consent to being part of a whole that is greater than the sum of its parts. It is also a debate about whether we are willing to entrust the state with certain powers allowing it to act in the best interests of society, as we do in so many other aspects of our life. That is not an easy thing to do. I listened attentively to a 15-minute contribution from the Minister, and I know one thing for sure: he has not come to a view on the matter, or, if there is a view, he is certainly reluctant to share it with the House.
As many colleagues will know, because I bore you about it a lot, I had the great benefit of moving to Spain as a young boy just after the 1978 constitution was introduced. The law that the Minister referred to is one of the first laws introduced by the new free democratic Spain under a socialist government. That law is very much founded on those principles of citizenship and is rooted in a French model of the state. It allows the state to take certain responsibilities and secures the consent of the people to operate it. Of course, no law is a solution in itself; it needs systems. The Minister is absolutely right: it took a generation to realise that, unless you put some systems behind a duty or responsibility, you do not really see change.
The one thing that seems very evident from today’s debate — this is the harsh fact that we need to reflect on — is that, in the vast majority of states where there are successful high transplant rates, the foundation is a law of presumed consent. It appears to me that there are not a huge number of states that are achieving very high transplant rates where there is not a foundation of presumed consent. The question then becomes twofold, and the first is about the law. I respect deeply Mr Ross’s libertarian views. Indeed, our livers have suffered on at least one occasion for the sake of debating those views in private, but we have to accept that taking a decision about a statute is only the first decision that we will probably need to take. The second and real challenge becomes whether the state wishes to operationalise that statute and put the resources behind it and the systems in place that will ensure that those duties are exercised in a fair and equitable way. That is a way of absolute informed consent, even if it is presumed, and it is a way that seeks to give the maximum amount of protection to such a critical decision. It would be an awful tragedy if we did not move on from that today and begin to explore the ethical and legal issues around a concept such as presumed consent, rather than get hung up on the debate about whether or not it is a good foundation. Wales has succeeded in doing that, and we have an opportunity to do the same. I think that it would be a lovely testament —
Paula Bradley (DUP)
The motion calls on the Health Minister to undertake a review of organ donation in Northern Ireland. The Assembly is not dealing with this issue in isolation. As Members said, in Wales, a White Paper examining how donors give organ donation consent has just ended its consultation phase.
I thank Members for what Mr Dunne called a mature and sensitive debate. I pay special thanks to Mrs Dobson for sharing with us the story of her son Mark. It is often forgotten that we have lives that go on outside the Chamber. I know that I speak for everyone when I say that I hope that Mark has a very full life ahead of him.
Mrs Dobson also said that organ donation has been called the gift of life. That was evidenced in the 2011 British Transplant Games, which highlighted how the gift of an organ can transform a life. For a registered donor, it is inexpensive, but for a recipient, it is the one thing that no amount of money can buy. It can also bring amazing comfort to a donor’s family. In Northern Ireland at the start of this month, 226 people were waiting for some form of transplant. In 2011, sadly, nine people in Northern Ireland died as a result of a scarcity of donors.
The organ donation task force contends that it should be possible to increase post-death organ donation for the entire United Kingdom by 50%. Just think what a difference that would make if one of our loved ones was waiting for an organ. It is important to remember that organ donation is not simply a local issue; organs donated in Northern Ireland can be sent to other regions of the United Kingdom and vice versa. The issues that need to be addressed to ensure that the process works to its best capacity have already been reviewed in the organ donation task force’s report.
There are, however, some startling statistics relating to Northern Ireland that increase the need for a review of organ donation. As Jim Wells said, the positive statistics show that 77 people received kidney donations in 2010-11, while a further 30 people from Northern Ireland received transplants from other centres in Britain. That total of 107 is up on the previous year’s figure of 77 transplants.
As Members said, the shortage of deceased donors needs to be urgently reviewed, as 51 of those kidney donations were from live donors. The lack of deceased donors means that people are risking a major procedure to help a loved one. For kidney transplants, the risk of death to a donor is one in 3,000; with live liver donors, that risk increases to one in 100. What a decision for any family to have to make.
As Mr McCallister said, we have a responsibility to have those conversations with our families and loved ones, and we call for an increase on the register. He also mentioned that many of us say that we will get around to putting our names on the register. It is like making a will or doing something around the house. Many of us feel that we want to be donors, but I, sadly, am like many others and have not registered. We need to push for more people to register. We must have a review to address how we can ensure that more deceased donors who can donate do donate. The review needs to be pursued sensitively and with care to ensure that no one feels unduly pressured to donate their loved one’s organs.
The number of potential donors identified in Northern Ireland last year through brainstem tests was 68; of those, 64 families were approached for consent to the organs being used. The number of potential donors identified after circulatory death was 54, yet only 15 families were approached and asked to donate. That is just over one quarter of potential donor families being asked to donate. That highlights that something is not working in the system to maximise the number of donors. In an ideal world, all potential donors should be approached and given the option of donation.
We as an Assembly should work towards ensuring that we can perhaps first follow the Welsh example of changing our current opt-in system to one of the two opt-out systems in place in 22 other countries.
Mr Ross raised various issues around the opt-out system, and that is a good example of why this review needs to take place. A sound evidence base needs to be sought in order for us to make a full and informed decision through an informed debate, as the Minister said.
Secondly, we can promote the transplantation of organs in a positive light. Mr Durkan commented on the various media campaigns that have run successfully over the years and should continue to do so. Finally, we can see what we can do to expand the ways that people can access the organ donation register to sign it while the review takes place. There are a number of ways that a person can register. As Mr Dunne said, this needs to be a little more innovative, and one of the most innovative that I have come across is through the Boots advantage reward card. When you sign up for that card, you can register to be an organ donor at the same time. That may be something that other large organisations need to look at.
Organ donation is a gift that is cherished, not just by the individual who receives but by their family and the donor’s family. We as an Assembly need to ensure that we are working to maximise the opportunity to give and receive this gift. As Mr Durkan said in his opening statement, we have a moral responsibility and are duty-bound. I therefore support the motion’s call for a review of organ donation as well as the amendment.
Question, That the amendment be made, put and agreed to.
Main Question, as amended, put and agreed to.
That this Assembly calls on the Minister of Health, Social Services and Public Safety to undertake a review of organ donation which should consider all options for increasing organ donations and carrying out a clinical ethics consultation on the introduction of an opt-out scheme.
That the Assembly do now adjourn. — [Mr Principal speaker is in charge of proceedings of the House of Commons in..." class="glossary">Deputy Speaker.]
Francie Molloy (Sinn Féin)
I remind Members that the proposer of the topic shall have 15 minutes. The Minister will have 10 minutes in which to respond. All other Members who wish to speak on this occasion will have up to 10 minutes.
Phil Flanagan (Sinn Féin)
Go raibh maith agat, a Phríomh-LeasCheann Comhairle. I missed how long I have to speak, but however long it was, I doubt that I will need it. I thank the Minister for coming. I know that he has a very busy schedule and that he has just finished an important debate on organ donation, so I am glad that he is here to listen.
The gaps in home healthcare provision in Fermanagh are a massive issue. The problem has been going on for many years, and, to be honest, I am heartbroken dealing with tales from distraught citizens who cannot access the most basic level of health and social care services, particularly in the most rural areas of Fermanagh.
There are clear gaps when one looks at where home help care is available and where there are problems. One of the main reasons behind that is the terms and conditions for those employed in the profession. Those employed as carers are passionate people; they are dedicated to what they do and are committed to those for whom they care. However, the poor rate of pay and the low or often non-existent rates of mileage payments make it very difficult for people to become a carer, particularly in rural areas where they have to cover a considerable number of bad roads to get to see someone who needs help. Those gaps in home help provision are seriously impacting on people and putting the quality of their lives at risk, particularly those who live in rural areas and who are very vulnerable and in their later years. We now have a situation in which the health budget is being cut significantly, in real terms, and that is putting massive stress on the health and social care budget.
I can quote one example of a lady in Garrison who had a fall recently and became paralysed. As a result, she needed 24-hour care and had to spend nine months in hospital. She would have much preferred to spend that time at home, and the medical practitioners in the hospital were happy to release her to be cared for in the community so that she could live at home with her husband. However, unfortunately, there was a complete lack of home help provision in Garrison at that time. Therefore, that poor lady had to spend nine months in hospital unnecessarily. It impacted not only on her quality of life but on the healthcare budget, because she had to stay in hospital at huge cost and for an unacceptable reason.
If the Department of Health, Social Services and Public Safety were to take an innovative look at the issue and provide proper home help provision in many rural areas, it would save itself huge sums of money. The problem is probably not confined to Fermanagh, but I am well aware of it in that area. However, the Minister and his officials will be in a better position to speak about it.
I introduced this adjournment debate to make sure that the Health Minister is aware of the issue. There are issues in Fermanagh, and probably in the wider Western Trust area, as a result of the recent tender award and subsequent legal challenge that is going on there. Due to that legal challenge, we are quite constrained in what we can talk about. However, there are issues with the Western Trust and its level of communication with agencies and with the independent and voluntary sector that provide home help services on its behalf.
People at the front line of delivering home help have voiced repeated concerns that the trust is creaming off the easiest or least problematic patients, who live in easier to access areas, and that it is leaving the more difficult, less profitable patients to the agencies and the community and voluntary sector. The result is that it is much more difficult for people who are doing the job voluntarily to continue doing it, and it is leaving those who are often in the most vulnerable position isolated.
I think I have outlined my concerns well enough at this stage. I am really here to listen to what the Minister has to say, to see whether he is aware of the issue, and whether he will take urgent action to address it as soon as possible, because these are people’s lives that we are dealing with. I feel that the issue can be addressed quite simply, and I know that there is ongoing rationalisation of home help provision contracts in the Western Trust. Therefore, I look forward to hearing what the Minister has to say. I thank him once again for coming here this evening. Go raibh maith agat.
Tom Elliott (UUP)
I thank Mr Flanagan for bringing this adjournment debate here today. I start by recording my thanks and appreciation to all home helps and staff who work in the community and deliver services to the wider public. Last year, during the really heavy snow and frost, those people went out every day for very little compensation or financial support and drove along the back roads, byroads, high roads, low roads and streets of Fermanagh and beyond to deliver home help care and support to the most vulnerable people in our society. It is only right that we record our appreciation to all those carers and support workers.
It is interesting to note that in the Western Trust area, which covers Fermanagh, the number of people who are being supported by the statutory sector and receive domiciliary care has fallen from 2,861 in 2008 to 2,328 in 2010, but the figures for people who receive care from independent providers appear to be reasonably stable. That other figure highlights a reduction of almost 20% in the number of people receiving that level of care from the statutory sector. I assume that Minister Poots will clarify or correct this, but my calculation is that 10%, or thereabouts, of the total health budget in Northern Ireland is spent on social care.
We need to move away from a discussion solely about domiciliary care to a much wider discussion about how we treat, respect and deal with what is an ageing population in Northern Ireland. The proportion of older people in Northern Ireland living in nursing homes is three and a half times higher than that in England and Wales. I wonder whether proper assessments are being carried out to establish whether those people are better suited to being at home or somewhere else, which would cost the Health Department less and, indeed, wider society.
The recent Compton review makes specific allusion to the fact that charging for domiciliary care will soon be considered. That is a significantly controversial issue and something that I believe would resonate widely with the public and bring forward a wider public debate. I know that the system that they are using in Fermanagh and, I am sure, other areas, is changing. I am sure Mr Flanagan will recognise that from his constituency workload that comes in. Many people who needed domiciliary care had one person go in to them, and they got used to that person. Now, by and large, they are changing to a rota system. Obviously, people will not have the level of consistency with a rota system that they had in the number of previous years. It is something that older people in particular will find very difficult to get used to. As the change takes place, grows and gets more frequent in use, it will, probably, be easier for those people to come to terms with the system, especially if they have never been used to one person being with them consistently. I recognise that difficulty that exists at the moment.
Mr Flanagan referred to the legal proceedings around the contract for domiciliary care for independent providers. I am led to believe that a date has been set for that legal case; it is sometime in May. Obviously, we await the outcome of that.
We had the privilege of having a very good domiciliary package for my late father. It is only when you experience it at first hand that you realise the real need for such a provision in the community and how much those people do, sometimes for fairly little reward. As we live in an ageing society, it is something that we must come to terms with.
As I said earlier, we must look at the bigger picture. How do we deal with an ageing population in Northern Ireland? We must look at the domiciliary care issues, bed-blocking in hospitals and care providers in nursing homes and residential care. We must also look at the difference between nursing homes in the statutory sector and those in the independent sector and consider whether one of those sectors offers cost savings or better care provision.
I welcome the discussion and the debate, although I think it is only a start to the much wider debate that needs to be had on the ageing population.
I support the topic for debate that has been proposed by Mr Flanagan. It is very appropriate. I support it primarily because a relative of my wife died in Fermanagh last October, and I saw at first hand the level of care that home helps can provide. The home help service has been cut and decimated too much. Very often, it has been one of the Cinderella parts of the social care system. I feel that home help services always get cut first when social care and community care package cuts are brought in. There are many families that greatly depend on home help, but if the carer who comes into a house has only 15 or 20 minutes allocated, it is virtually impossible for that carer to provide the level of care that they want to.
In large towns, agencies can provide a bank of care workers, and very often they manage the system quite well. However, out in scattered rural areas, people depend on individual members of the community who provide a home-help service. I know a lady who looks after five different people in the Glenelly valley. She told me that trying to look after five people every morning and afternoon is a nightmare. Were she not so generous with her own time, she would not be able to cope. She gives more than the 20 minutes allocated to each person. The carer, and her interest for the patient, is being exploited. That is something that the Minister and the Department should examine.
In some cases, families realise that the home-help service is not adequate. Very often a social worker will come and assess the case and has to recommend that the person is put into residential care. That is largely because the home-help service that the family gets is not for long enough, or is not sufficiently sustainable, so that the family and the social worker must decide that the person has to go into residential care. That is often a missed opportunity, and it leads to greater costs. If there were a more adequate home-help service, it would not be an issue.
I support the debate and I thank the Minister for being here.
Sean Lynch (Sinn Féin)
Go raibh maith agat, a Phríomh-LeasCheann Comhairle. I also support the debate brought by my colleague Phil Flanagan. I am sorry for arriving late; I was at another event. I did not catch all the debate, but I will echo much of what Joe has said. I will point out a number of key issues. Since I received notice of this debate, I have been speaking to a number of carers and other people. Thank God, none of my family has yet had to receive care.
I know the person whom Joe Byrne was talking about; she comes from the town of Lisnaskea. The problem is the time limits. Carers will tell you that they are barely out of the car and sometimes, though the client is barely out of bed, they have to move on to the next client. It is impossible to get someone out of bed and dressed in that time, particularly if that person has dementia or Alzheimer’s disease. I do not mean to be disparaging, but the client can be awkward and the carer may have to move on to the next client without having even made the person a cup of tea. Those underlying problems often mean that those people are disadvantaged. A carer told me of a case where she went in and her client was sick but, because there was insufficient time, the carer had to move on to the next client and there was not time to call a doctor. The sick client had to wait another four hours until their next carer visit.
There is another issue, which may have been mentioned before I came into the Chamber. A lot of the carers get no travel expenses. Those people work for the minimum wage; they have to pay tax out of that; and, if they have to pay travel, it is very difficult to get anyone to drive any sort of distance. That is particularly a problem in Fermanagh, it being a very rural constituency. It is not worth their while.
Joe is right. Sometimes, carers go beyond the call of duty and give that bit of extra time — more than is required of them — because they have a relationship with the person for whom they are caring.
Those are two key issues for the Minister. We are talking about a cornerstone of the health system. Those people, in their late years, are some of the most vulnerable in society. We should protect them, and put in place the means for them to have the best quality of life.
Edwin Poots (DUP)
I thank the Member for securing the debate.
One of my key priorities is to ensure that, wherever possible, people are helped to maintain their independence at home. That is vital, and everyone should have a choice about the care they need and how that need will be met.
The message that we have been receiving loud and clear in the Department is that people want to continue living independent lives in their own homes for as long as it is practical to do so.
Looking to the future, our population of over-65s is set to more than double in the next 50 years. In 2008, we had 248,500 people aged 65 years and over. That represents 14% of the population, and it will increase to 24% by 2041. A man reaching 65 today can expect to live another 17 years, while a 65-year-old woman can expect to live another 20 years. I see that Mr Wells is with us; vegetarians can anticipate a further seven years. That is according to Mr Wells, I might add.
To ensure that we have the resources to care for those older people who may need social care, we must modernise the services that we can offer them. In order to achieve that, I have firmly committed to continuing to transform the way that the services are delivered in our communities to ensure access to high-quality services that are close to home. ‘Transforming Your Care’ illustrates the range of issues that we need to face.
I have committed to taking forward a fundamental review of the direction and funding of adult social care in Northern Ireland, starting over the next few months with the publication of a discussion document that sets out the issues that we need to debate so that we can take all this into account.
A key element of the way that our social care has developed in recent years has been the expansion of flexible and responsive domiciliary care services. Domiciliary care has incorporated the former home help scheme, and it provides help with a range of services, such as personal hygiene, continence management, problems of immobility, food and diet, including assistance with eating, and simple treatments, including assistance with dressing and getting in and out of bed.
Through our mixed economy of care, which is a partnership between the statutory sector and the independent and voluntary sectors, we are helping more people than ever to stay at home and to avoid admission to hospital or residential care. Over 23,000 people in Northern Ireland, including over 4,500 in the Western Trust area, are in receipt of domiciliary care packages at a cost of £155 million.
In Fermanagh specifically, the trust provides social care in partnership with several independent and voluntary organisations. In 2010-11, the Western Trust delivered on average 21,240 care hours each week through 17 service providers at a cost of £11·52 million. The Western Trust provides about 40% of domiciliary care services, with the independent sector providing the remaining 60%.
An analysis of recent home care referral activity demonstrated that, over a two-month period, the Western Trust facilitated 661 referrals trust wide for new home care cases or increases to existing cases. Of those, 182 — or 27·5% — were in Fermanagh. That figure is higher than in the other three localities, clearly demonstrating that home care is routinely accommodated in Fermanagh.
It is estimated that 550 domiciliary care workers are employed across Fermanagh. That compares favourably with the trust’s other three localities. In 2011, the Western Trust delivered home care services worth £18·9 million. Approximately 24% of that, which is around £4·6 million, was spent in Fermanagh. Based on the local population figures, the per capita expenditure on home care in Fermanagh is currently higher than it is in the other trust localities.
The projected increase in the number of older people has been well documented. Unfortunately, however, the resources that are available to us will not increase accordingly. So, with that in mind, as well as the need to reform and modernise the services on offer for older people, the Western Trust last year tendered for independent home care provision.
A key objective of that tender process was the opportunity to reform the home care service delivery model and commissioning arrangements to generate efficiencies, thereby increasing access to home care services across the trust area. However, a subsequent legal challenge has meant that the trust has been unable to progress that key reform. It is hoped that that matter will be resolved soon, enabling delivery of the benefits that the trust expects to be delivered. The trust assured me that that tendering process is not an attempt to bring about a reduction in domiciliary care services in County Fermanagh. Rather, it is to improve commissioning arrangements and produce a more effective model of service delivery for a greater number of people.
Although the primary care responsibility must be to those at greatest risk, I recognise that preventative, low-level support can avoid deterioration in an individual’s situation. I therefore expect the health and social care service to develop methods of risk assessment to help it to identify those where risks to independence appear relatively low but are likely to become more serious over time. I am keenly aware that we must strike a delicate balance between the necessity to respond to urgent and intensive needs and, at the same time, ensure that people with lesser needs do not unnecessarily slide into dependency for the want of early intervention.
Domiciliary care, with all its component parts, plays a vital role in maintaining independent living. However, other services are actively involved, such as intermediate care, which is designed to bridge the gap between hospital care and health and social care in the community; rehabilitation and re-enablement services; community meals; remote tele-monitoring and assistive technology; and many services provided by the community nursing and primary care teams, to name but a few. I also pay tribute to the tireless work of the many thousands of unpaid carers who help to support loved ones in their homes. I do not take such support for granted and do not believe that it should go unrecognised.
Above all, it is crucial to take into account the perceptions and wishes of the individuals themselves and their carers about how they wish to have their care delivered, by whom and in which setting. As we look to the future, I expect to see a real move towards a greater personalisation of people’s care packages, reflecting their own and their carers’ wishes as well as needs. Direct payments represents a start in that direction but, currently, as a scheme, does not go far enough in its ambitions and is not attractive enough to service users. Clients need to be helped to work with trusts to create and manage tailored packages of care that suit their circumstances and preferences. Fitting the client or patient into the nearest available service is not good enough. People expect more say, more control and more choice in how their needs are met. That is what they told the ‘Transforming Your Care’ team and what they are telling us every day.
Clearly, tough decisions will have to be made to ensure that we are able to meet the needs of the very vulnerable in our community and the challenging financial commitments in this difficult economic climate. However, I am firmly committed to continuing to transform the way that services are delivered in our communities to ensure access to high-quality services close to home, whether in County Fermanagh or any other part of Northern Ireland, so that people’s needs are met in as flexible and responsive a way as possible.
Adjourned at 4.38 pm.