My Lords, this is such a timely and important debate, coming the same week as the Keogh mortality review, the Neuberger report and the latest report from the Health Service Ombudsman. Our focus tonight is on health inequalities for a group that comprises some 3% of the population. Our focus is on the remit and findings of the Confidential Inquiry into Premature Deaths of People with a Learning Disability. The inquiry’s report was published in March and the Government’s response was released last Friday. The House will wish to be reminded that I have worked as a psychiatrist with people with learning disabilities for over 30 years and that my adult son has a learning disability.
The institutional discrimination and health inequalities suffered by people with learning disabilities come as little surprise to many of us. For me it is a throwback to some of my own research from over 20 years ago when I reviewed the age and causes of death of people with learning disabilities in three London boroughs over a 10-year period. I found that adults with a learning disability were 58 times more likely to die before the age of 50 than the general population. Over half died of respiratory disease—which I presumed to be a final common pathway—compared with only 15% of the general population. The problem was that I could not get the results published. The BMJ and other medical journals said that it was not of wide enough interest. It was eventually published in a specialist disability journal. Government began to show leadership, however, with the White Paper, Valuing People,and Chapter 6, which addressed healthcare, accepted my suggestion that a confidential inquiry should be included as a recommendation.
In 2006 a formal investigation was conducted by the Disability Rights Commission and in 2007 Mencap published Death by Indifference. By this stage, although Valuing People had recommended a confidential inquiry, it had still not been set up. Death by Indifference was a landmark report and it told the stories of six people with a learning disability who had died in NHS care. It triggered an independent inquiry which was led by Sir Jonathan Michael—I should mention that I was a member of the inquiry team—and the Parliamentary and Health Service Ombudsman conducted an investigation into the six deaths. The Michael report, Healthcare for All, made a firm recommendation to set up a confidential inquiry and the Government at last agreed.
What is a confidential inquiry? It aims to identify common causes of deaths and to make recommendations to improve clinical practice. There are many in existence, some going back more than 50 years, with varying degrees of effectiveness. They involve the systematic review of cases with the identity of patients and clinicians remaining confidential and only aggregated findings being made public. Several of these inquiries have resulted in long-term monitoring and regular reports and one of these is NCEPOD, the National Confidential Enquiry into Patient Outcome and Death. It started with a pilot study of mortality related to anaesthesia but steadily expanded into a wider inquiry to cover all hospital specialties, now including near misses as well as deaths. NCEPOD distributes reports on very specific mortality concerns and if it feels that important recommendations are not being met, it lobbies at both local and national levels. It is this ongoing monitoring and national oversight of the uptake of recommendations combined with the fact that it has been in existence for decades which makes this inquiry effective.
In the confidential inquiry that we debate today Dr Pauline Heslop and her team have recommended the establishment of a national mortality review—basically a beefed-up confidential inquiry. This would guide detailed local reviews but also include a national overview panel. Its wider remit and role would provide an oversight of core data relating to all deaths of people with a learning disability. It could monitor and direct where more detailed reviews need to take place and, vitally, it would make recommendations for changes in practice. A longer-term commitment to this vulnerable patient group is needed for a real impact to be seen. The United States started similar mortality reviews and over the past 10 years it has seen an increase in life expectancy among people with a learning disability. The confidential inquiry we are discussing today was only established for three years—effectively as a pilot. It looked at the deaths of 233 adults and 14 children across five PCT areas in the south-west. Its focus was to determine whether the deaths of people with learning disabilities were premature. The principal aims were to detect factors which contributed to death as well as gaps in health and care services.
The results expose the gulf that still exists between the care received by people with a learning disability and that received by the rest of the population. It found that 37% of deaths would have been potentially avoidable if good quality healthcare had been provided. It found that on average, men with a learning disability died 13 years earlier and women 20 years earlier than the general population. Mencap says that this means that over 1,200 deaths each year across England could have been avoided with good-quality non-discriminatory healthcare—almost 25 children and adults per week. That is a shocking figure, which equates to the number of people thought to have died needlessly over a four-year period at the Mid Staffordshire hospital.
I am sure that other noble Lords will address some of the findings in more detail, but I will focus on the wider picture for a little longer. While Mid Staffs rightly hit the headlines, as did Sir Bruce Keogh’s report earlier this week, the avoidable deaths of people with a learning disability, some of the most vulnerable people in our society, go largely underreported and consistently fail to feature prominently on the parliamentary agenda.
“Today, I am publishing ‘Living Well for Longer: A call to action to reduce avoidable premature mortality’”.—[Hansard, Commons, 5/3/13; col. 60WS.]
Sadly but perhaps predictably, the document did not even mention people with learning disabilities. That is despite the fact that in the 2011-12 NHS outcomes framework, the Department of Health added a placeholder indicator for measuring premature mortality in people with learning disabilities. This was further specified as the,
“Excess under 60 mortality rate in adults with learning disabilities”—
“under 60” because that reflects the current average age of death for people with learning disabilities. Unfortunately in the latest NOF—national outcomes framework—for 2013-14, this indicator is still in the inactive “development” stage. Will the Minister advise when the Government will give it live status and assure the House that the threshold will be reviewed year on year to bring it closer to the threshold of age 75, as in the general population? That would ensure the collection and publication of some vital data.
However, one of the problems is the difficulty that we still have in the identification of people with learning disabilities in health and care records. This was one of the recommendations of the Michael inquiry and, again, the confidential inquiry notes it as being of critical importance. Dr Heslop explains that concerns would never have been raised about many cases reviewed by the confidential inquiry had their care not been scrutinised. I agree with her that professionals learn more and change their practice more by being reflective and reviewing cases using a root-cause analysis approach. Merely telling a professional to do something rarely works, as is evidenced by the lack of adherence to the Mental Capacity Act and the Equality Act.
This inquiry provides a firm foundation of knowledge upon which the Government could take real and purposeful action—urgent action—to address these startling and persistent inequalities. However, this is not borne out in the Government’s unambitious response which acknowledges the findings that health inequalities exist but contains no set goals or timescales and no ways of measuring improvements. They could instead have followed the structured style of response they made to the Winterbourne View hospital scandal by working with stakeholders, including families and carers—many of whom are listening to the debate today, and whose presence I welcome. Will the Government consider a concordat to take forward the confidential inquiry recommendations and the construction of a clear, timetabled action plan?
The lack of commitment to the inquiry’s central recommendation about a mortality review body is disappointing. Despite the overwhelming evidence that this is the right thing to do, a decision will not be made until March 2014, by which time another 1,000 children and adults will have died prematurely. I urge the Government to bring this to the top of the agenda, not to push it down the priority list yet again.
As for the Francis inquiry, we say yes; but what about the enormity of the challenge that the Government face in achieving equality in access to healthcare and in health outcomes for this group? I ask the Minister to persuade the Secretary of State to include in the remit of all future health reports and inquiries, and in the work of the new Chief Inspector of Hospitals, the question, “Did people with learning disabilities fare better or worse?”. At the moment the answer is probably “worse” in all aspects of healthcare. I know that noble Lords will pick up many of the specific issues that I have not touched on, and I thank them for their support and passion for this debate. I also look forward to the Minister’s response and hope that he will be able to reassure this House that the Government are not indifferent and will act much more persuasively in future.
My Lords, I refer the House to my registered interests regarding disability and health and I congratulate the noble Baroness, Lady Hollins, for bringing this very important debate to the Floor of the House.
I begin with the part of the report that deals with annual health checks. Such checks for people with learning disabilities are an excellent way for doctors to pick up early even more serious problems than the patients themselves realise they have or are able to articulate. In some cases, if a person is not medicated, it could be the only time in a year when a GP sits face to face with them.
Linking the health check with health action plans is extremely important. The regular screenings that the rest of the population almost take for granted—because we are reminded that we are due a certain screening and we welcome this preventive and early opportunity to check whether there is a problem—is something that people with learning disabilities may lose out on because, when a letter arrives telling them it is time to phone for an appointment for a particular screening, they may simply throw away the letter and never have the screening. The annual health check therefore provides that opportunity.
The confidential inquiry found that the weakest link in the chain of the care pathway for people with learning disabilities was problems with diagnosis. It is very easy to misinterpret or ignore something from someone who is unable to articulate their symptoms or pain. I believe that it is key that the annual health check is expanded beyond its current very useful functions to ensure that it is used to provide a much more comprehensive look at, and a holistic approach to, that person’s health. The Government have accepted that there is inequality in healthcare investigations. They have detailed how NHS England will address this through working with clinical commissioning groups, and I understand that they will set out the details later in the year. That will be a crucial piece of work, which I hope will include tangible and measurable objectives on improving investigations that lead to diagnosis.
For people with learning disabilities in particular, and—the House will not be surprised to hear me say—for those on the autistic spectrum, many of whom also have learning disabilities, communication is a major issue. It is important for primary care services to understand the patient; if that person needs to attend a GP or nurse appointment accompanied by someone who can interpret their mood, behaviour and articulation, the primary care services must take into account that this can be quite painstaking and time-consuming. If people with a learning disability are to be treated equally, it is very important that the primary care service, and the services in hospitals when investigations often take place, allow for the fact that there may need to be a person in support who will help the clinicians to interpret how the other person is feeling.
I turn now to the part of the report that deals with the Mental Capacity Act. A number of reports, including the Confidential Inquiry into Premature Deaths of People with Learning Disabilities and the Francis report, have identified problems with how the Mental Capacity Act is understood and applied. They identified the lack of compliant practice with the Act as a barrier to effective NHS care. The inquiry found evidence of disagreement about what professionals understood by “serious medical treatment” and thus a lack of consistency about appointing independent mental capacity advocates to support those without family members to represent their views. There has also been evidence of unlawful NHS practice.
Declaring an interest as a mother, I add at this point that it is not just people without relatives to speak up for them who are not always listened to. In that shocking report from Mencap, Death by Indifference, which the noble Baroness mentioned, and reports that have followed on from the original report, we have seen the deaths of young people whose mothers have stood by their bedside and tried to explain the symptoms of their adult children to clinical staff, only to be told, “He’s over 18 and he hasn’t expressed his wishes in that way”. There is no other word for it but wicked.
So what are the Government pledging to do? The Department of Health has apparently agreed that mental capacity advice should be available 24 hours a day. It said:
“There should be staff trained in the MCA available 24 hours a day, and there should be specialist advice available in all care settings”.
It also says:
“Service providers have the primary responsibility for ensuring existing staff have the required knowledge and awareness of the MCA … The responsibility for the content of education and training curricula … lies with”,
“the professional regulators and the appropriate Royal Colleges”.
As a member of the Select Committee in this House that is currently looking at the post-legislative scrutiny on the Mental Capacity Act, I was somewhat concerned, when we took evidence at our first session on
“the assessment revealed an inconsistency in assessing capacity in some trusts to ensure that the Act was fully embedded”.
Claire Crawley, who spoke on behalf of the Department of Health, said:
“In terms of hard evidence, could I sit here and say, ‘I absolutely know that every local authority has appropriate plans and training processes in place’? I could not say that because I have no way of getting that evidence. The regulator of the industry, as it were, the Care Quality Commission, does not monitor local authorities or inspect them any more, so I would not know”.
Very often the local authority appoints the person who has the day-to-day care for the patient, so local authorities are as much involved in this as the NHS. When pressed by the noble Baroness, Lady Andrews, about the position of NHS trusts with regard to assessment of capacity was concerned, Claire Crawley told us:
“That would probably have been the CQC’s process … rather than the department’s process”.
I say to my noble friend that when a department, particularly the Department of Health, puts a piece of legislation such as the Mental Capacity Act on the statute book, it has a duty and responsibility to ensure that it is complied with, particularly for this vulnerable group of people. It is simply not good enough to say, “Not me, guv, it’s somebody else’s responsibility”.
My Lords, I refer the House to my interests as a vice-president of the National Autistic Society. I congratulate the noble Baroness, Lady Hollins, on securing this timely debate, coming, as she said, so soon after the publication of the Government’s response to the Confidential Inquiry into Premature Deaths of People with Learning Disabilities and just two days after the publication of this report from the Health Service Ombudsman, which I want to speak about.
I welcome this debate because it affords us the opportunity to debate the wider subject of health inequalities affecting people with a learning disability. The confidential inquiry is a crucial piece of work and shows that 37% of deaths could potentially have been avoided if good-quality healthcare had been provided. It is a terrible indictment of our care support system for the most vulnerable group of our fellow citizens, who are being let down. They and their carers often find it hard to express themselves in a way that might help prevent the tragic happenings that the inquiry has revealed. Like many noble Lords, I am aware that the support groups and those who work with people with learning disabilities have significant concerns about the Government’s response to the inquiry, a point well made by the noble Baroness, Lady Hollins. They feel that it is simply not strong and purposeful enough to really drive the change that we all wish to see.
On a wider point, a report from the Health Service Ombudsman, laid before Parliament on Tuesday this week following an investigation into a complaint against a GP practice, makes some pretty awful reading and should act as a wake-up call. It reveals how a GP service let down a young man with severe learning disabilities and it starkly draws into focus the attitudes that pervade in the system.
The young man is just 23. He has severe learning disabilities and behavioural problems, and he has epilepsy. He has historically been prescribed a series of medicines in liquid or dissolvable form because he becomes very distressed if he has to take tablets. One of the medicines was midazolam, used in emergencies if his epileptic seizures lasted beyond three minutes. In April 2011 his mother asked their GP for a repeat prescription in liquid form to help her son’s epilepsy. The GP refused her request because it was too expensive. He would only prescribe her son suppositories or tablets in future.
The mother advised the GP that her son had been prescribed only liquid medicine from a very young age, as his learning disabilities caused him to become very distressed if he had to swallow tablets. Despite this, the GP said he would no longer prescribe any of the young man's medicines in liquid form for cost reasons and would prescribe only tablets in future. The doctor told the mother to find a GP,
“‘who has bigger budgets’ and who would ‘be happy to prescribe the medications’”.
The mother was clear that the decision not to prescribe her son suitable medication put him at risk, including of death. However, when she subsequently complained to the GP practice about the doctor's decision, the response was far from understanding and helpful. She got a letter informing her that there had been a “total breakdown” in the doctor-patient relationship and advising her to find a new GP within 21 days as she and her son were to be removed from the practice’s list.
I can only ask noble Lords to imagine the significant distress that followed. The General Medical Council guidance is clear: doctors must ensure that prescribing of medicine is appropriate and responsible and in the patient’s best interests. The guidance also states that doctors should, when appropriate,
“establish the patient's priorities, preferences and concerns”, and
“discuss other treatment options with the patient”.
After investigating the case, the ombudsman found that the GP had not given the young man the medication he needed on the grounds of cost, and had ignored disability discrimination law in the process. The ombudsman was clear in the report that the doctor,
“did not act in line with the Mental Capacity Act, GMC guidance and established good practice.”
The report found that the doctor,
“did not consider his responsibilities under the Mental Capacity Act in reaching his decision”, about the young man's medication. He did not assess the young man’s,
“capacity to make a decision about his own treatments or medications. Nor did he take any of the required actions that could have led him to reach a ‘best interests’ decision”, on the young man's medication.
The case shows a lack of understanding of reasonable adjustments and disability rights. Public bodies are required to comply with the Equality Act 2010, which includes the duty to make reasonable adjustments. They should also have regard to the various statutory codes of practice that have been published to assist in the interpretation of the legislation. The ombudsman’s report brings into sharp focus a specific case and uncovers the treatment that people with a learning disability and their families can face within the health service. The ombudsman, Julie Mellor, said:
“This is yet another case where someone with learning disabilities has been failed. When there are failures in the care and treatment of people with learning disabilities, there are consequences in terms of their health and in too many cases, their life expectancy.”
Unless the Government take strong action in this area, cases such as these will continue to occur. That is why I strongly support establishing a national mortality review body, which would allow for the collection of mortality data and, importantly, for investigations of specific cases, a point made by the noble Baroness, Lady Hollins. Critically, it would provide the opportunity to improve the understanding of the causes of premature deaths and enable the National Health Service to improve care for people with a learning disability.
The ombudsman’s report highlights a terrible wrong committed against a vulnerable young person. I hope that this Parliament and this Government will act to stop these awful and discriminatory cases occurring in future.
My Lords, I, too, thank the noble Baroness, Lady Hollins, for bringing to the attention of the House the report that gives us the opportunity to discuss this issue. The report makes for sobering reading. Many noble Lords speaking in this debate have far more expertise in these matters than I have—in fact, looking around the Benches, I think that they all have—but the first NHS trust board that I sat on more than 15 years ago was a community trust with learning disability, mental health and community health responsibility for all of Cornwall, so I come at this with at least some understanding. I commend the work in this area by both the noble Baroness who, during her tenure as president of the BMA, sought to raise the profile of learning disability, and the noble Lord, Lord Rix, a long-time advocate of those with learning disability, and president of Mencap, which I thank for producing an excellent briefing.
In the past, there have been plenty of situations and reports, and we have heard about some of them today, that should have given successive Governments a wake-up call regarding poor provision for people with a learning disability—Budock Hospital and Winterbourne View, to name two, both of which point to the inevitable health inequalities. For many years now we have known that the health commissioning of learning disability services has been poor. Many PCTs wrote a cheque to providers and effectively asked them to get on with it. Indeed, there is a historic similarity with mental health service commissioning. Mental health now has parity of esteem status with physical health, but it does not feel as if the same can be said for learning disabled people.
The history of a lack of communication between health and social care in this area is well known, too. It was as if, after the move to take people out of large establishments and put them into domestic settings, commissioners and providers decided that the job was done, the spotlight went off, attention moved elsewhere and quality was forgotten. I must acknowledge that there are some splendid services, but that standard is not yet universal.
So what are good services? Here I have to thank Professor Jim Mansell of the University of Kent for the list from his 2010 report, Raising Our Sights. Good services should be individualised and person-centred, treat the family and carers as expert, focus on staff relations with the individual, sustain the package of care and be cost-effective. In addition, they should be supportive, use appropriate advocacy and be predictive and well implemented. I do not wish to belittle the work of the professor but none of this list should come as a surprise to the House. The surprise and shame is that this list is not part of universal practice.
That brings us to the Confidential Inquiry into PrematureDeaths of People with Learning Disabilities. The report was commissioned by my right honourable friend Paul Burstow following the events at Winterbourne View. It is thorough and contains a detailed and practical set of recommendations. In the time that we have, I am unable to cover all aspects of the report so shall focus on information, staffing and the Mental Capacity Act. The report puts the spotlight back on mortality. As we have already heard, it is particularly appropriate that we are discussing the mortality of people with a learning disability in the week when the Keogh report did just that for the total population served by 14 hospitals. Sir Bruce was able to do that because he had the data. This report is based on a dataset that is not normally collected for people with a learning disability.
The report’s first recommendation is that people with learning disability should be clearly identified on the central NHS registration system and in all healthcare systems. Although outside the scope of the report, this information should be recorded on social care records too. A learning disability flag should be part of a standardised dataset and I would hope that a combined, patient-held record would be a reality in the not too distant future. Not only does this make identification easier, it would aid audit and research, make joint strategic needs assessments far more accurate and easier to produce and make reasonable adjustments easier to flag, thus improving commissioning and contracting. This is not an unreasonable request, it is an issue of equality, and without it people with learning disability cannot be treated equally. I would like the Government to commit to a clear timeline for this work, so would the Minister tell us what that is, or when we might know what it is?
Moving to staffing, the report calls for a named health worker to be allocated to those with complex or multiple health needs, and I welcome the Government’s response and further suggestion of a named worker in acute settings. There is also a need for specialist learning disability liaison staff in community settings. Can the Minister give an indication of when it is intended to roll this out?
These changes bring a need for training. Will the Minister reassure the House that Health Education England can put training programmes for health workers in place, and when they might become available in local training settings? Would he also confirm that training will be mandatory and included in continuous professional development for all health workers?
Finally, I turn to the Mental Capacity Act, which the noble Baroness, Lady Browning, has covered well. As she has said, it is currently under scrutiny in your Lordships’ House and is pivotal to people with a learning disability, as it is to any vulnerable group. Advice under this Act should be available at all times and easily accessible. That will pose challenges in delivery, and I ask the Government not to forget or ignore patient involvement and engagement in this. Members of the sector are very good advocates, but there is a real need for people with learning disability to be consulted and involved in improving access to the Act.
In conclusion, I have outlined the issues around records, data and information, the Mental Capacity Act and staffing. Would the Minister ask his colleague, my honourable friend Norman Lamb, the Minister for Care and Support, to come to the House in the autumn with NHS England’s new lead for learning disability to share with members of the House its thinking on these issues and the action plan that has arisen from this report?
I think that it was Gandhi who said that society could be judged by how it treated its most vulnerable. Reducing health inequalities should be central to that. It is not an issue which will attract the attention of voters; it is something that we do solely because it is the right thing to do. I would hate it if, 10 years on, we were seen to be wanting.
My Lords, I declare an interest as patron of Mencap Wales and Autism Cymru. I welcome the opportunity to speak in this most important of debates. As the noble Baroness, Lady Hollins, has set out very clearly, the figures are shocking and should rightly make us very angry indeed. The fact that 37% of deaths investigated by the confidential inquiry could have been prevented with better healthcare should rightly motivate us to do all that we can to tackle the startling health inequalities that people with a learning disability face. I share her concern that the Government have not gone far enough in order to bring about the change we really need to see. It is particularly disappointing in light of the fact that the issue was brought to the attention of the Government before and met with similar inaction.
In 2006, I was a commissioner at the Disability Rights Commission and worked on the formal, 18-month investigation into healthcare given to people with mental health problems and learning disabilities. It was then that I first came across the findings of the work undertaken by the noble Baroness, Lady Hollins, that those under 50 years of age with learning disabilities or mental health issues were 58 times more likely to die from medical conditions not associated with their disability than was the general population of that age group—58 times more likely is a staggering figure.
The DRC’s resulting report, Equal Treatment: Closing the Gap, found that those with learning disabilities or mental health issues regularly get worse treatment than others. The study, carried out in England and Wales, examined several million health records and found that people with learning disabilities and mental health problems were more likely to have a major illness, to develop a serious health condition younger, and to die sooner than the rest of the population. Despite this, the same group of people were less likely to have routine tests and screening to pick up signs of a problem at early stages. For example, people with learning disabilities who have diabetes have fewer measurements of their body mass index, while those who have had a stroke have fewer blood pressure checks. The investigation also identified a problem known as diagnostic overshadowing, whereby symptoms of physical ill health are often seen as part of a patient’s mental health problem or learning disability and are not properly investigated or treated.
One of the aims of the work was to see which areas of the NHS would need to improve in the context of the then recently introduced Disability Discrimination Act, including the duty to make reasonable adjustments for disabled people, something which was in place since 1999. We were clear that GPs needed to make reasonable adjustments in order for people with a learning disability to access healthcare effectively. This included simple things such as making appointments by e-mail, providing treatment information in alternative formats or sending text or phone appointment reminders. Also important in terms of reasonable adjustments was raising awareness and understanding among both GP clinic and hospital staff in terms of learning disability.
This is demonstrated powerfully through the story of Susan. Susan died on
I emphasise the need for reasonable adjustment. Sadly, it seems that things have not changed nearly enough since our investigation. In 2006, we made the point on numerous occasions that reasonable adjustments were not being made as a matter of course. The confidential inquiry builds on this by highlighting that:
“The lack of reasonable adjustments to facilitate healthcare of people with learning disabilities, particularly attendance at clinic appointments and investigations, was a contributory factor in a number of deaths. GP referrals commonly did not mention learning disabilities, and hospital ‘flagging’ systems to identify people with learning disabilities who needed reasonable adjustments were limited”.
Its recommendation therefore seems sensible and measured that reasonable adjustments required by, and provided to, individuals be audited annually and examples of best practice be shared across agencies and organisations.
The Government’s response to this is far from purposeful, saying that they will instruct NHS England to look at the possibility of strengthening provider contracts to include an annual audit. Public authorities have a duty to make reasonable adjustments, and that includes adaptations and accommodations to ensure that people with a learning disability can access healthcare on an equal footing. Back in 2006, we were clear that there was no excuse, the duty having been there since 1999. In order to move this forward, strong leadership is needed by the Government and key agencies if we are to avoid these failures persisting within the healthcare system and thousands of vulnerable people paying the price.
My Lords, as president of Mencap, I welcome the opportunity to speak in this important debate, having rushed from the other Lord’s in St John’s Wood to support my noble friend Lady Hollins in her battle to achieve health equalities for learning-disabled people.
As someone who has worked in the world of learning disability for more than 60 years, I am of course aware of the persistent health inequalities that exist. The figures from the confidential inquiry are shocking and the report makes sober reading. That over a third of those investigated died due to poor healthcare is nothing short of an outrage and should be front-page news. The fact that, on average, men with a learning disability die 13 years earlier and women with a learning disability die 20 years earlier than the general population should be reported alongside the horrific facts, figures and stories from the Mid Staffordshire scandal. Instead they appeared in only a handful of articles, well tucked away. It is a further disappointment that no Oral Statement was made, either when the inquiry was published in March or last week when the Government published their response. That is why this debate is so important.
As many of your Lordships know, I chair the All-Party Group on Learning Disability together with the right honourable Tom Clarke MP. For many years we have brought in people with a learning disability, their families, advocates and professionals, to create a dialogue with MPs and Peers. On Monday I chaired a well attended meeting on this very subject where we heard from the confidential inquiry team and the learning disability public health observatory together with people with a learning disability, family members, carers and the Minister, Norman Lamb.
The inquiry team is to be commended on an excellent, robust piece of work, exposing the stark health inequalities that people with a learning disability face and providing the Government with 18 excellent recommendations on which to move forward. As my noble friend Lady Hollins stated, it seems that the key recommendation, that a national mortality review body be set up to collate data and investigate and report on deaths, is critical in order to keep momentum going, as well as to start the kind of culture change that we must see within the NHS. It is therefore deeply disappointing that the Government have shied away from this critical recommendation, putting off any sort of decision until March 2014. Like my noble friend, I wonder how many more people will have died unnecessarily by that date.
The most powerful account given at the meeting was that of Christine, a mother who tragically lost her daughter Tina in 2009. Tina lived at home with her parents and her sister. She had learning disabilities, epilepsy, Russell-Silver syndrome—a form of dwarfism—and severe scoliosis of the spine. Tina had generally been physically well but developed a cough and a high temperature. Her parents called the doctor and Tina received a home visit from her GP during which she was prescribed antibiotics and paracetamol. Her condition deteriorated, however, and her parents rang the surgery to request a second home visit. This was refused, as was their first request to the out-of-hours service.
It was not until a second call to the out-of-hours service—which resulted in a home visit and a diagnosis of aspiration pneumonia—that Tina was referred to Basildon hospital. Once in hospital she was diagnosed as suffering from pneumonia and a chest infection. The hospital did not give her the treatment she needed or even meet her basic care needs. She suffered several seizures in hospital and went for four days without food. She died on
Tina’s death has had the most profound impact on Christine, of course, and her family. At the meeting she said:
“Our daughter was a human being and we protected her and cared for her all through her life until she became ill. We argued with the Doctors from day one; firstly the GP and then the hospital. They saw a child laying there with a disability and decided her life wasn’t worth saving”.
The Parliamentary and Health Service Ombudsman’s investigation of the case found failures and delays in diagnosing Tina’s condition, a failure to act in line with the Mental Capacity Act 2005, failures in the communication of Tina’s condition to her parents, a failure to implement Tina’s transitional care plan and a failure in meeting Tina’s rights as a disabled person.
Christine is rightly concerned about Vikki, her other daughter, who also has a learning disability. She described at the meeting how she and her family were fearful every time Vikki became ill and when she had either to visit the doctor or go to hospital.
We owe it to Christine and her family, as well as to countless others, to stop these health inequalities leading to death by indifference—the apt title of a report by the Royal Mencap Society.
My Lords, I add my congratulations to the noble Baroness, Lady Hollins, on initiating this critically important debate. As the title of the debate states—it bears repeating—we are today discussing the health inequalities of a particularly vulnerable group, highlighted by the confidential inquiry into the premature deaths of people with learning disabilities. I speak today not because of any specialist knowledge but because of my interest in health inequalities, of which this is such a stark example, and I am grateful to the National Development Team for Inclusion for its briefing.
I am sure we can all agree that many of the findings of the report were horrifying. I will not repeat the statistics that many other noble Lords have already given the House. Suffice it to say that nearly three times as many people with learning disabilities die avoidably than die among the general population. Like many noble Lords, I find this shocking. Surely the issue should be treated with the same seriousness and urgency as responses to the appalling events at both Winterbourne View and Mid Staffs. The latter led to the highly influential Francis report and the immediate implementation by government of some of its key recommendations.
I will first make a few points on the factors leading to this vulnerability and these premature deaths. The confidential inquiry found that a fifth of people with learning difficulties experience significant difficulty or delay in diagnosis of their illness and that, as a result, there is often too little proactive care for this group and too many crisis-driven responses. It found a lack of reasonable adjustments to help healthcare, particularly in basic things such as attendance at GP surgeries and clinics; that GP referrals often do not mention learning difficulties; and very limited hospital flagging systems. Additionally it found that poor record keeping is creating problems and that, in some instances, even “do not resuscitate” orders in patients’ records have been found to be inappropriately or poorly documented. As others have said, there was poor adherence to the Mental Capacity Act and, finally, the inquiry identified poor co-ordination of care across and between different disease pathways and service providers, which failed to understand the episodic nature of care provision. That is only a few.
We know a great deal about the problem and we cannot continue to allow one group of people, those with learning disabilities, to experience such drastic healthcare inequality. It is because I know that the Government have such a strong commitment to reducing health inequalities that today I ask the Minister to consider immediate action in the specific areas on which I will focus my contribution. I am encouraged to do so in the knowledge that the Care and Support Minister, my honourable friend Norman Lamb, recently said:
“It is not good enough that people with learning difficulties are at a greater risk of dying earlier due to poor health care. … We are making progress on improving standards of care but we have to go further and keep driving forward our plans”.
I could not agree more.
First, regarding the confidential inquiry’s concern about a lack of adherence both to the Mental Capacity Act and the Equality Act, outlined by other noble Lords today, will the Minister clarify the Government’s plans to address this concern? Secondly, while details about the deaths of people with learning disabilities identified by the inquiry illuminate the severity of the problem, they only provide a snapshot. As anyone who has taken at least a basic course in statistics knows, cross-sectional data—what the confidential inquiry has assembled—cannot tell us as much as longitudinal data.
The confidential inquiry recommended that the Government should create a mortality review body and has offered three different models for doing so in subsequent discussions with the department. This would provide a critical ongoing lens into the mortality of people with learning disabilities. Will the Minister explain the Government’s plans and timetable for creating such a body?
Thirdly, the confidential inquiry also describes the current healthcare situation as one largely driven by crisis, with a lack of evidence of sufficient forward planning. Will the Minister provide his reaction to this assessment and say how forward planning can be improved?
Finally, on the care of those with learning disabilities, the only support currently available to clinical commissioning groups and local authorities is provided through the Learning Disabilities Specialist Public Health Observatory, which is part of Public Health England. This work involves a specific work strand on promoting learning and on sharing that learning with the wider sector and local areas. It is very important that this work continues and, given the number of people with learning disabilities who are supported both through social care and who live with their families, that this work programme includes specific action to support social care, understands the action needed to reduce premature deaths and works alongside action targeted at family carers. Will the Minister say what support the Government intend to put in place to ensure that local areas are able to implement the recommendations of the inquiry?
I finish by suggesting some additional practical actions for the Government to consider to try to improve the current situation. First, they could identify those people with learning difficulties who are afraid of seeking medical assistance and provide them and their carers with support and training now, before the need for urgent medical treatment arises. Secondly, they could offer a named healthcare co-ordinator to all people with learning difficulties with two or more long-term conditions and to those who live unsupported or with minimal support in the community with one or more long-term conditions. This would be akin to the Government’s recent proposals to refresh the NHS mandate, including by providing a co-ordinating clinician for the non-hospital care of another very vulnerable population—the elderly. This is something I very much support.
Thirdly, the Government could require all health and care services to assess and document the reasonable adjustments that individuals with learning disabilities need to access healthcare equitably and to share this information with providers so that people with learning disabilities are properly identified and providers have the duty to ensure that these reasonable adjustments are made. It must be possible to co-locate community learning disability nurses into GP practices to work alongside GPs.
Finally, will the Government consider requiring all acute hospitals to have at least one learning disability liaison nurse in post? These are just practical and specific examples—we have already heard others today and I am sure that we will hear more. I look forward to hearing the Minister’s response to these and other points.
My Lords, I thank my noble friend Lady Hollins for this timely debate and for her contribution over the years on the issue of learning disabilities. I declare an interest as a retired general nurse. Not holding any qualification in mental handicap, as it was then referred to, I have limited experience with learning disabilities, mainly associated with relocating patients from the large hospitals in the 1970s until the late 1980s. However, that experience was one that has stayed with me in terms of demonstrating that people with learning disabilities and their families are a group who require a range of specialties to come together to ensure that their quality of life is the best possible.
Although this debate is asking the Minister what steps the Government are taking to address health inequalities, it is difficult just to debate health, as has already been illustrated today, because so much is dependent on the part played by education, social care and families. The opportunity has now been given to us, with the new Health and Social Care Act and the Care Bill, to develop healthcare pathways further. We should take this opportunity to ensure connection and communication through the education system, social care and specialist mental health care and that learning disability staff are involved in the total well-being of the individual and the family. Otherwise it is likely that there will be gaps which, in turn, may be detrimental to the general health of the individual with the learning disability.
It is now 65 years since the NHS was introduced with the assurance of free care for all at the point of delivery. During those 65 years, we have seen many developments for those suffering a learning disability, which have come step by step and usually following the unfortunate findings of inquiries into poor care, such as in Ely, Farleigh and Whittingham—all large hospitals that were found wanting in the delivery of care. In the 1970s, we abolished long-stay large hospitals and moved patients into the community, which was a big step towards a pathway for each individual that set a programme of care according to their needs. However, even within the 20 years since that move, we have cause for concern about small units that have failed in their delivery of care.
This confidential inquiry into premature death provides the opportunity to address the pathway for learning disabilities and for health and social care professionals, support workers, educationalists and families to contribute to the development of a meaningful, holistic pathway for every individual person with a learning disability. This surely demands a culture change and leadership, as well as offering a learning opportunity for all health and social care professionals and general educationalists to understand the philosophy of caring for those with a learning disability. It requires good communication links between all of those, with each of them understanding the overall philosophy and strategy of an integrated pathway for the individual. It is clear that this would be a large piece of work and would take time to be achieved. It will require all of the disciplines to be involved, as well as the families, who we know have had to fight a long battle to break down the barriers between all the involved agencies. There needs to be shared ownership of that responsibility—everyone has to ensure that the pathway is high quality and leads to people living as normal a life as possible with the appropriate support and with regular physical health checks.
Coming back to the confidential inquiry, I would make four points. The first is about health records, which has already been mentioned in detail by the noble Baroness, Lady Tyler. I am sure that in this day and age it is not beyond the wit of any of us to see that it would be possible to get a health record that can not only integrate the issues relating to the handicap but attach a personal profile to the health action plan that could be implemented and given quickly to the person and to the family.
Secondly, there is advanced healthcare planning. I suggest that the Government need to give further guidance once long-term problems are diagnosed. There should be a trigger for the plans to be instigated and a risk assessment and a crisis-point plan drawn up. These health plans could easily be put together as long as there is communication between all aspects and that the medical side is aware of the way forward.
My noble friend Lord Rix has already mentioned palliative care and the dreadful time that the patient in Lewisham experienced. The confidential inquiry identified some problems with end of life care. It is clear that palliative care teams need to be supported during the time that palliative care is being provided to a learning disability patient. A specialist learning disability nurse should be available to those teams when this is required. At least two patients in every hospital have a learning disability. Of these some may have profound multiple learning disabilities. The role of the registered learning disability nurse is important in giving guidance in hospitals on the specialist support of patients. Can the Government ensure that workforce planning outcomes include a calculation for the roles of nurses qualified in learning disabilities to be available for such teams?
If the noble Earl agrees that this should be the way forward, what steps will the Government take to ensure that that NHS England, Public Health England, local authorities and professional regulators develop the curriculum and standards for health and social, social care professionals and general educationalists, Healthwatch, well-being boards, and charities such as Mencap to meet the requirements for the best possible pathway for healthy living within the capabilities of the individuals suffering a learning disability and their families? This would include a model to maintain general good health and the reduction of the rate of premature deaths as is suggested by the inquiry.
If the philosophy and strategy are clear for the person suffering from a learning disability, we can then be assured that all aspects of their life will be taken care of, with the support in place where necessary. This in turn will be effective for other members of the family who, over time, as experience tells us, have had to overcome tremendous difficulties through sheer lack of professionals not understanding the situation being described or the damage that can occur, including breakdown to the family unit.
My Lords, I declare an interest as president of GS1, chair of a foundation trust and a consultant trainer with Cumberlege Connections.
It is a great pleasure to follow the noble Baroness, Lady Emerton, and to congratulate the noble Baroness, Lady Hollins, on her initiative in securing this debate.
I applaud her efforts in again raising in your Lordships’ House the appalling health outcomes of so many people with learning disabilities. I shall not repeat what other noble Lords have said. The statistics are clear and there is a clear consensus that they are accurate, and the outcomes are very disturbing. We must recognise that this is now an issue that has been identified for at least six years; the evidence from Jonathan Michael’s report,
, which found that patients with a learning disability experienced delays in diagnosis and treatment, a lack of basic care and poor communication from health professionals, is now six years old. Clearly, the confidential inquiry findings have endorsed the original findings of the Jonathan Michael inquiry.
The noble Baroness, Lady Hollins, was a member of the inquiry team, which is significant. Sir Jonathan Michael is a very distinguished chief executive of an NHS trust. In some ways, it was even more persuasive coming from that quarter, when he found so many examples of indifferent healthcare for people with learning disabilities.
As noble Lords have said, when one thinks of our recent impassioned debates about health outcomes, the Keogh inquiry and the Mid Staffordshire inquiry, the number of premature deaths of people with learning disabilities is so shocking that it is disappointing that society as a whole, the media and the political world are not taking it as seriously as they ought. These debates are very important in alerting the public and the Government to the need for action to be taken.
The noble Baroness, Lady Browning, made some very good points about the need for annual health checks and screening and the substantial problems of diagnosis and communications. The noble Baroness, Lady Tyler, mentioned “do not resuscitate”, and it made me wonder whether the follow up to the Liverpool care pathway that will be taken forward in the light of the report by the noble Baroness, Lady Neuberger, will be an opportunity to look specifically at the needs of people with learning disabilities to ensure that they are captured within the new approach. I hope it is something that the Minister may be able to take on board.
The noble Baroness, Lady Tyler, spoke about the employment of specialist staff in hospital. My trust has recently employed two people to do that. If one looks at the recent seminar that the noble Baroness, Lady Hollins, chaired under the auspices of the BMA, it is noticeable that many of the recommendations coming from it are about communications; training staff to identify and understand the needs of intellectually disabled and mental health patients; changing the culture of the NHS from unfounded, ill informed judgments about mental health and intellectual disability patients; and ensuring those patients are subject to the same access standards as physical health patients. Given all the problems over the past few years, there is no doubt that specialist staff within hospitals have an important role to play.
Given all this, it is difficult to know why the Government seem to be dithering over establishing a national confidential inquiry. The noble Baroness, Lady Hollins, described the national confidential inquiry into perioperative deaths. Over the decades, it has done outstanding work in indentifying patterns of death that have led to improvements in services. The noble Baroness may recall Mr Brendan Devlin, one of the great pioneers of the ECEPOD, who never achieved the recognition that he ought to have received for his work; I suspect that at the time he was not popular with his colleagues in the profession. I remember talking to him and seeing the results of those inquiries and the reports that were issued. I hope that the Minister will be able to say something a little more positive about the Government’s intentions. The benefit of a permanent confidential inquiry is that year after year, in report after report, evidence will be brought forward and statistics will be made available. I am convinced that it is a very powerful way to drive up standards in future. The great risk is that if we do not have another inquiry, the issue will go away and will be forgotten in the health service. That is why one needs permanent machinery to enable it to be done.
If it is a question of finance—I have to be very cautious about what I say on funding issues—comparisons concerning the cost of a permanent national confidential inquiry into the deaths of people with learning disabilities could only be minimal in terms of the human cost to those people and their families of the premature deaths that are caused by the current problems in services.
When the appalling events at Winterbourne View came to light in the report—it is not so long ago that the Minister made a Statement to your Lordships’ House on this—a great deal of discussion concerned the role of commissioners. In the case of Winterbourne, once the commissioners had placed a person in the home there was virtually no contact. What is being done to enhance the role of commissioners? We have an opportunity to come back to this on Report in the Care Bill, in which there is a provision around the role of the CQC in regulating the commissioners of local authority services. I hope we might come back to debate whether we can give more power and ammunition to the CQC in this regard.
I have two final comments. My noble friend Lord Touhig raised an important issue about the role of general practitioners and some of the failings in our primary care medical services. The Minister knows now that the responsibility for contracting with GPs lies with NHS England. It would appear that NHS England also has a big role to play in ensuring a continuous and permanent confidential inquiry. Is the Minister satisfied that NHS England has the capacity to develop and drive policy in this area? Surely it is in its hands. It has the ability to fund and organise a national confidential inquiry. It also has the ability to ensure that the issues my noble friend raised about access to GP services are dealt with effectively in contracts with general practitioners. I hope there will be further opportunities to debate these important issues in the future and that the Minister might be prepared to take back the pressing question of a permanent confidential inquiry.
My Lords, I thank all the speakers in this excellent debate for their very powerful contributions, not least the noble Baroness, Lady Hollins. I want to start by paying tribute to Mencap, which has been campaigning vigorously against the preventable deaths of people with learning disabilities. Mencap has revealed fundamental failures in communication between care providers, on the one hand, and parents and carers, on the other, as the main cause. However, it has also concluded that the only other explanation for these preventable deaths is prejudice. The disturbing reality is that this prejudice, although rarely revealed in words, finds its expression in deeds, sins of omission and neglect. Any failure to understand what should be a fundamental tenet of NHS practice is shameful: every life is different, yet every life has the same value.
I want to take this opportunity to make the Government’s position clear. Mencap’s report, Death by Indifference, marked the start of six years of shocking revelations of inhumane and degrading treatment, culminating in the recent publication of the Confidential Inquiry into Premature Deaths of People with a Learning Disability. We established the confidential inquiry in 2010 and funded and supported it for three years. As Sir Jonathan Michael’s report, Healthcare for All, recommended, it was time limited. Its purpose was to provide evidence on the relevant issues and guidance on preventing premature deaths. It has done this very effectively and I thank the confidential inquiry team for its excellent work.
This important report reached the conclusion that people with learning disabilities are continuing to die or experience poor outcomes because they are not getting the right care, and noble Lords have cited some graphic and disturbing examples this afternoon. Although the report makes for sobering reading, it gives us a clear indicator of the areas that need to be tackled, preparing the ground for the Government’s response to the confidential inquiry which was published last Friday. Our response makes clear our determination to eradicate substandard practice and to work in partnership across the health and care system to deliver the improvements that we all want to see.
In our response, we set out a series of specific actions. We will use the information strategy for health and care to improve how we identify and respond to people with learning disabilities and their health and care needs. We will link data about cause of death with other information to better understand and respond to premature mortality among people with learning disabilities. We expect local organisations to use local mortality data to inform joint strategic needs assessments and joint health and well-being strategies. We will support named healthcare coordinators being available to people with learning disabilities. They will coordinate a person’s care, talk to other professionals and be involved in planning the individual’s care.
NHS England will review plans for learning disability annual health checks. We know that appropriate health checks can identify needs which can then be addressed by referral to appropriate services. We will try to strengthen the NHS standard contract to improve the care of people with learning disabilities. We know that the contract is a powerful lever to incentivise good practice. We will monitor, through the mandate, the progress the NHS is making to ensure that people with learning disabilities in vulnerable circumstances receive safe, appropriate, high-quality care all the time.
We will work with partners to review awareness and understanding of the Mental Capacity Act and how it works in practice in making sure that people receive appropriate care at all times, including at the end of life. We will work with partners to review guidance on cardiopulmonary resuscitation. NHS England will appoint a national clinical director for learning disabilities, who will help improve the experience of people with learning disabilities in care. Local areas can set up their own arrangements to review mortality in people with learning disabilities. Some are already doing so, working with the confidential inquiry team. This work will be shared more widely for other areas to develop similar approaches. Building a strong understanding of what is happening in local provision will be critical to making change happen.
Over all that, in the Health and Social Care Act, we have a new specific statutory duty on the Secretary of State, NHS England and clinical commissioning groups, with the aim of focusing on reducing inequalities throughout the health service in both access to services and outcomes achieved. This will be an enormously powerful tool in addressing the health inequalities which people with learning disabilities face.
However, the response to the confidential inquiry is just part of a programme of activity from government and partner organisations designed to deliver system change and a shift in culture and attitudes. Changes in health and social care delivered by the Health and Social Care Act 2012 provide the building blocks for that shift. First, safe, appropriate, high-quality care is a key priority for NHS England. The noble Lord, Lord Hunt, asked about the capacity of NHS England to focus in this area. It is under a specific legal duty to tackle inequalities and advance equality. Priority areas where we expect progress to be made by 2015 include supporting people with multiple long-term physical and mental health conditions and improving their quality of life, and preventing people from dying prematurely.
Secondly, the NHS Outcomes Framework 2013/14 will allow us to measure the quality of services and outcomes for people with learning disabilities. This framework includes an indicator on preventing people with learning disabilities from dying prematurely. Improvements for people with learning disabilities will also be a crucial element of success across the framework as a whole.
Thirdly, Transforming Care, our national response to Winterbourne View hospital, sets out a programme of actions to ensure that people with learning disabilities or autism no longer live inappropriately in hospital, and receive optimum care. A wide range of delivery partners signed up to a programme of action designed to deliver transformed care in the Winterbourne View review concordat. The concordat sets out a number of specific actions for NHS England, including ensuring that all primary care trusts develop registers of people with learning disabilities or autism who have mental health conditions or behaviour that challenges, and making clear to clinical commissioning groups that they are expected to maintain local registers and, with the local authority, review individuals’ care. All reviews will be completed by the end of July. By next April, every area will have a joint plan to ensure high-quality care and support in line with best practice. By next June, everyone will have moved to community-based support where appropriate.
I hope the noble Lord will forgive me. The Winterbourne View concordat does not address the physical health needs that we are talking about in this debate. I asked whether the Government might consider a similar concordat to look at the physical health needs of people with learning disabilities. Would the Minister care to comment?
My Lords, I would like to deal with some of the points raised in the debate. Can I say, as I always do, that if I fail to cover all the questions raised, I will of course write to noble Lords afterwards? On the issue of a concordat, which was raised also by my noble friend Lady Jolly, our response makes clear that we have already been able to take action in some areas—for example, by asking organisations to review and update guidance. In other areas, progress relies on several issues, such as new and emergent organisations developing their strategic approach, and key individuals being in post. Across all of the actions, there is a broad timescale with a commitment to provide regular updates on progress. The Department of Health will continue to review progress through the Learning Disability Programme Board.
On records, data and information we are working with the Health and Social Care Information Centre, NHS England and the Improving Health and Lives Learning Disability Observatory to address the issues. There are several areas we need to look at. For example, we know that there is already information in GP practice learning disability registers. We want to make better use of this by linking it to other data that is already collected. We will have an update on progress by the end of the year. I will write to supplement those comments because my time is running short.
My noble friend Lady Tyler asked what support the Government will give to local areas to implement the confidential inquiry recommendations. The department is working closely with the public health observatory to make sure that its work to share good practice includes the issues raised by the confidential inquiry. We have already suggested to the inquiry team that we need to work in partnership with NHS England and other stakeholders. To make progress on the actions we need to align with work that the inquiry team is already doing at a local and regional level.
The noble Baroness, Lady Hollins, asked when the outcomes framework indicator on premature deaths will be live. It is live from 2013-14. We are currently collecting data to underpin the indicator and we will have data by November of this year.
The national mortality review body was a subject raised by many noble Lords. The department and the confidential inquiry team organised a meeting in March to discuss the proposal for a mortality review body. I am aware that the noble Baroness, Lady Hollins, and other stakeholders with expert knowledge and interest attended that meeting. Our response confirms that NHS England will consider the proposal to establish a national mortality review body, including looking at the costs and benefits by March next year. Noble Lords expressed their concern about that timeline and I have no doubt that NHS England will take note of the strength of feeling expressed by noble Lords on this issue during today’s debate.
I have a lot more to say about liaison staff, the Mental Capacity Act, reasonable adjustments and other themes, not least those raised by the noble Baroness, Lady Emerton, on care pathways and the role of nurses. I will write on all of those issues. I want to end with a reassurance that people with learning disabilities and family carers remain at the heart of everything we do. The Government must lead by example. That is why the Learning Disability Programme Board includes learning-disability self-advocates and family carers as well as a self-advocate and the chief executive of Mencap. We have a long way to go but change must be effected at scale and pace. There can be no more excuses or procrastination from any part of the system if we are to achieve our collective goal of a society where everyone is valued and has the chance to lead productive and, most importantly, healthy lives.