I suspect that I will not be alone in the House in having concerns about how NHS continuing care is operating these days. Concerns about the process will have been raised by the constituents of many hon. Members on both sides of the House. It is worth recognising that the process of NHS continuing care has always been fraught because a lot of money often turns on the outcome, and the families affected are often going through a very difficult time as they cope with a loved one with serious care needs. However, particular things are happening in the system now that seem to justify our spending some time on considering whether the current situation is acceptable.
As the NHS and the care system struggle with what I think are impossible finances, some wholly unacceptable practices are emerging around the country, some of which I want to deal with this evening. First, it is clear that a postcode lottery is emerging, with no democratic legitimacy at all. The massive variation in the acceptance rate for applications for NHS continuing care has no apparent justifiable explanation. The BBC’s “Inside Out East” programme made a freedom of information request about the period between July 2016 and July 2017. It found that Birmingham South Central clinical commissioning group rejected 75% of those assessed for NHS continuing care, whereas the figure for Tameside and Glossop CCG was just 5%. Given that this is public money, how can we possibly justify such an extraordinary variation without any democratic legitimacy? The BBC’s figures also showed that 73% of people in my constituency were turned down, but that the figure for Manchester was just 17%. These are not odd examples—there are enormous variations across the country. I would be grateful if the Minister could explain how these extraordinary variations are happening and what she and the Government intend to do about them.
In my experience, this depends not just on the postcode, but on how the referral is made. If a referral is made through a hospice, the process is clear and transparent, but with other mechanisms, it is more smoke and mirrors.
The hon. Lady might well be right. That does not justify the variations, but it is a possible explanation for part of the problem.
Secondly, the number of people nationally who are found to be eligible is falling. The National Audit Office found that the proportion of people assessed as eligible for standard continuing healthcare by CCGs reduced from 34% in 2011-12 to 29% in 2015-16.
Does the right hon. Gentleman agree that home care packages must be better funded so that people can live independently at home, while still being cleaned and cared for, but that that is extremely difficult due to the finance available?
I will come on to that point in a moment. We are seeing more and more cases of couples being forcibly separated, which is really shocking and a denial of their human rights, so I agree with the hon. Gentleman.
At the end of March 2017, 57,000 patients were eligible for continuing healthcare in England, which was down 1.6% on the previous quarter and 2.7% on the previous year. What possible explanation for that can there be? Demand is rising significantly every year across the country, yet the number of people entitled is going down. That must be due to decision makers imposing tougher eligibility criteria.
Is the right hon. Gentleman aware of the trend in my constituency of people who are already in receipt of continuing care being reviewed and deemed no longer eligible? As a result, the cost of their care is pushed on to local government, instead of continuing to be met from within the health service?
I am aware of that. Often there is no change in such people’s condition, but sometimes their condition deteriorates. Sometimes the cost is pushed on to the local authority, but sometimes it is pushed on to the family, which is another very serious concern.
There are also a great many complaints about the process that is used. There are complaints about evidence being ignored, which can result in a judgment that someone is ineligible for NHS continuing care, and about professionals lacking an understanding of the condition that they are supposed to be considering. A survey conducted by the Continuing Healthcare Alliance found that 66% of people felt that professionals knew little about the condition that was under consideration. More seriously, there were allegations that medical opinions were being ignored. The BBC heard from three health workers who revealed, effectively as whistleblowers, that medical opinions were actively ignored as part of the process.
It took one of my constituents several months and many phone calls even to receive an assessment for her relative. When she finally managed to receive it, the nurse on the day said that it was unlikely that continuing healthcare would be provided. Does my right hon. Friend agree that treating relatives in such a way when they are already going through a very difficult emotional time is unacceptable, and that staff should be given training before undertaking such assessments?
I do agree. The problem is compounded by the long delays that people have to face, often at very stressful times when they are wondering whether they will have to sell a home to pay for care and have no idea what the outcome of the process will be.
There are a number of cases around the country in which the costs of packages have been capped, with top-ups required from relatives. A growing number of clinical commissioning groups are applying a cap to what they will pay for home support packages above the cheapest care home alternative. That is really insidious. At the extremes, it is reasonable to recognise the pressures on public finances but, as the BBC reported on “You and Yours”, 19 CCGs refused to pay for home care packages if the costs were 10% higher than the costs of a care home. There are many cases in which couples who may have been married for decades are suddenly forcibly separated. What are we doing? That is inhuman, and, as I have said, it breaches a human right—the right to a family life.
I congratulate the right hon. Gentleman on securing this debate on a very important subject. I have encountered cases in my constituency in which people have been delayed from leaving hospital because an argument is raging between the local authority and the CCG about who is ultimately responsible for payment, partly because the CCG is encouraging people to opt for cheaper care home provision even if that is not what they want. Has the right hon. Gentleman come across similar cases in the course of his research?
Depressingly, I have. Earlier this evening, when I was giving the Speaker’s lecture, I made the case that we need, ultimately, a pooled budget for both health and care to stop these awful arguments between the health and social care silos.
In my experience, trying to define which is the social care part of an individual’s need and which is the medical part can be very challenging, as many people will have a combination of both. Does the right hon. Gentleman agree that the Government’s proposal for accountable care systems in which one group is responsible for meeting both needs is a great step forward?
If it were happening, I would. I totally agree that we need to bring health and social care together in localities, with a single budget and single commissioning. I think that we need to work across parties to come up with an ultimate long-term settlement for the NHS and the care system.
Families are also in the invidious position of being asked to provide, in effect, a top-up for care if they want their loved one to remain at home, rather than being forced into a care home. That is fine for those who can do it, but not good for those who cannot afford it. It is also completely contrary to any notion of personalisation —the concept of the person, what is important to them and their priorities being at the heart of decision making—which the Government accept. When I was working with the Conservative party in coalition, we passed the Care Act 2014. Its fundamental principle was the individual’s wellbeing, yet now are saying to people, “No, you’re going to go into a care home because it’s cheaper.” That is not acceptable, but it is happening around the country.
The right hon. Gentleman is very generous. He makes a strong case, but sometimes people’s healthcare needs are so great that it is impractical for them to be looked after in their own homes, so things are not quite as cut and dry as he is indicating.
If there are good medical reasons, people can of course have the discussion and it might be decided that a care home is the right place, but I am talking about cases in which the only issue is the finances. People are told, “It costs 10% more to provide care at home. You’re going into a care home.” That is not acceptable, but it is happening.
The BBC reported on a family who were paying a top-up of £250 a week. Top-ups are not permissible under the legislation, but that is happening around the country. The BBC gave a case study of a man in Salford, paralysed from the neck down, who was entitled to NHS continuing care. His entitlement was assessed as 168 hours a week, but the CCG was willing to pay for only 105 hours. What was the result? He has been stuck in hospital since Easter in the way that Gareth Snell described. It is outrageous. Another case highlighted by the BBC was that of Mark in Norwich, who has type 2 spinal muscular atrophy, a progressive muscle-wasting condition, and very limited mobility. He has had a personal health budget worth £73,000 for the last six years, but it has now been cut by a third. How does he cope with a reduced care package when he has such a condition, which is deteriorating as he lives longer?
The Equality and Human Rights Commission has written to the 44 CCGs with the most disturbing policies of hard caps to make it clear that it is a breach of human rights law if people are deprived of the option of living at home and therefore the right to a family life. There are also concerns that there is an expectation in the costing of the care package that people will work for the minimum wage. Of course some people work for the minimum wage, and they should be accorded the utmost respect, but much of the work involved is complex and challenging, so it is very disturbing if there is an assumption that only minimum wage work is undertaken.
NHS England expects efficiency savings from the continuing healthcare system. That cost £3.1 billion in 2015-16, which was 4% of the total CCG spend. The figure is expected to rise to £5.2 billion by 2020-21 because of increased demand. In its efficiency plan, NHS England requires CCGs to achieve efficiency savings of £855 million by 2020-21, but how? The National Audit Office found that only £149 million is spent on administration, which is where efficiency savings can be made, so I will be grateful if the Minister explains how that efficiency saving can be achieved except by cutting people’s care plans, which is in my view intolerable.
Then there are the delays, as my hon. Friend Wera Hobhouse mentioned. The national framework says that people should know the outcome within 28 days, but long delays are common across the country. The National Audit Office said that a third of claims took longer to process than that, with 10% of the total taking more than 100 days. Even more disturbing are delays in the fast-track process for end-of-life care. It is really important to make a speedy decision in such cases, perhaps to get someone out of hospital to the place where they want to be. There is a 48-hour standard, but Marie Curie found in its “Making every moment count” report that there was enormous variation, with less than a third of cases meeting the 48-hour timeframe. Many CCGs did not know how long they were taking, and 57,000 people waited longer in 2015-16. Delays can mean that people with a terminal illness are stuck in hospital, unable to die in the place of their choice. When I was a Minister, I introduced a legal right to a personal health budget, but we find again and again that arbitrary caps are being placed on personal health budgets, and that people are expected to accept a care plan that involves a percentage reduction compared with what the cost of provision would be for authorities.
There is an enormous case for reform. I have argued for an NHS and care convention that brings the parties together to come up with a rational solution that meets people’s needs and does not treat them in this rather disgusting way, especially when so much stress and anxiety is involved in coping with someone with very considerable care needs, especially at the end of their life. The system is arbitrary, costly, bureaucratic and enormously variable around the country. It involves no democratic accountability or justification, and it undermines the principle of putting the patient first. What are the Government going to do about it?
I thank Norman Lamb for securing the debate and giving the House a chance to discuss NHS continuing healthcare. He has achieved a pretty good attendance here tonight, given that it is a Monday on a one-line Whip, which is symptomatic of the interest in the subject. I find that heartening, and he spoke with great sincerity and passion about his concerns. We are grateful to him for that; I know that he thinks very deeply about this subject.
This subject provides challenges, as the right hon. Gentleman pointed out, and he made some valid points about the problems facing the continuing healthcare system. In particular, the Government are aware of issues around variation and the complexity in the system. He highlighted some important examples of that. He also highlighted discrepancies, which he was right to raise. We all recognise the frustration that many members of the public sometimes have with the current system. For those with complex needs, and their families, the process can be very difficult to understand, which can lead to stress and confusion at an already difficult time in their lives. He will know that variation in the system has been a concern for some time. First, I will set out what the Government are doing to address those things and to try to achieve consistency, before I turn to some of the other concerns.
Decisions about NHS continuing healthcare are important and have a big impact on people’s lives, which is why it is right that there is a careful and considered decision-making process in place, which must take into account each individual’s care and support needs. My officials are currently working on updating the NHS continuing healthcare national framework, which is the national guidance that underpins the system. That will help health and social care professionals across the country to apply the framework more consistently and effectively, and improve the experience for individuals. We are working with NHS England, local authorities and key stakeholder organisations such as the Continuing Healthcare Alliance and other charities on this update, to ensure that we draw on the full range of experience and knowledge. Members of the public with experience of NHS continuing healthcare have also made a valuable contribution to this process.
I would like to reassure the House that this update to the national framework will not affect eligibility for NHS continuing healthcare, or the extent of the service provided by the NHS. Instead, the update aims to clarify the process and improve outcomes for patients, carers and their families, and those working in the health and care system. The Department will publish this update to the national framework in the new year. However, we understand that these changes alone are not enough to deliver all the necessary improvements, particularly on issues such as the variation in eligibility decisions that the right hon. Gentleman highlighted. That is why we are working closely to support NHS England with its NHS continuing healthcare improvement programme.
The aim of the improvement programme is to consider how NHS continuing healthcare services can be improved by addressing key areas of concern—namely, variation in patient and carer experiences, and ensuring that assessments occur in the right place and at right time. That issue has also been raised in the debate tonight. The programme will set national standards of practice and strengthen links between other NHS England work programmes that promote the personalisation of care.
To some extent, there will always be some variation in NHS continuing healthcare eligibility rates, and that can be due to wide range of reasons, such as the age dispersion within a local population, variation in levels of health need between geographical areas and the availability of community services, including step-down beds, intermediate care, rehabilitation services and end-of-life services. However, NHS England analysis shows that variation in NHS continuing healthcare eligibility is reducing over time. Work to address variation has already seen improvements, with an approximate 7% reduction in the distribution of variation across standard NHS continuing healthcare eligibility decisions since 2013-14, but the National Audit Office report shows that we obviously have some way to go.
The NHS continuing healthcare assessment process has also been mentioned tonight, and NHS England has introduced a quality premium for 2017 to 2019 to incentivise clinical commissioning groups to carry out more than 80% of assessments within 28 days. Clinical commissioning groups with the highest number of delayed cases are required to establish improvement plans setting out key milestones and planned improvement measures.
The right hon. Gentleman mentioned the claim that budgets are effectively being capped, but I want to emphasise that the national framework for NHS continuing healthcare makes it clear that the starting point for agreeing an NHS continuing healthcare package and the setting where NHS continuing healthcare services are to be provided should be based on the individual’s preferences. However, in some situations, a model of support preferred by the individual will be more expensive than other options and clinical commissioning groups can take comparative costs and value for money into account when determining the model of support to be provided. None the less, the principle that healthcare is free at the point of delivery should and does stand.
Right hon. and hon. Members also raised the breach of human rights and the challenges made to some CCGs. We are interested in the thinking behind that and will explore such issues further.
The right hon. Gentleman discussed the wide variation in the conversion rate of assessments. In his constituency, the conversion rate of 24% appears low when compared with the national average of 31%, but that has to be set against the fact that standard NHS continuing healthcare is currently available for 68.13 per 50,000 people compared with a national average of 43.04 per 50,000 people. I make that point because meaningful comparisons are difficult, but he is right to highlight such issues so that we can satisfy ourselves that we are delivering the commitments in the Care Act 2014, which states that no one should be deprived of care if it is based on their need.
The right hon. Gentleman suggested that some clinical opinions were being questioned, so I want to make the Government’s position clear. CCGs must have regard to the guidance, which states:
“Financial issues should not be considered as part of the decision on an individual’s eligibility for NHS continuing healthcare, and it is important that the process of considering and deciding eligibility does not result in any delay to treatment or to appropriate care being put in place.”
All hon. Members should ensure that that is being adhered to and make appropriate challenges where we believe it is not. The Government and NHS England are looking at strengthening our assurance processes to ensure that those standards are met and that CCGs comply with the national framework. Since April this year, that now includes extended quarterly reporting of NHS continuing healthcare data metrics and robust improvement monitoring, including on eligibility and assessment conversion rates.
I know that the right hon. Gentleman wrote to NHS England about the performance of North Norfolk CCG. I am sure that he is waiting for the outcome of the review with some interest, and I will not be surprised if I hear from him again on this. I am grateful for his interest in this subject and for the spirit in which he made his comments.
As we are all living longer, the challenges to the health service and the care system are becoming ever greater, and he is absolutely right to highlight the need for cross-party co-operation as we address these issues and set the long-term future of care and health on a more sustainable footing.
I understand how the system should be and how the Minister wishes it to be, but our comments tonight have been about how the system is. We can make information available to the Minister about instances that show the system is not working as she describes. I have a constituent with a severe spinal injury who was getting continuing healthcare. There was a tick-box exercise that she thought was just a review, but, nine or 12 months later, the care has been taken away.
I would be happy to look into that case. I have received advice that continuing healthcare packages for lifestyle or physical conditions are often altered depending on progress. The guidance under the framework is quite clear on what is applicable, who is eligible and what conditions are not eligible. Where there is a question on whether obligations are being met under the law—the obligations are enshrined in the Care Act and under the NHS principle that all treatment should be free at the point of delivery—the hon. Lady is right to make that challenge. I am more than happy to investigate that case.
I am running out of time, and I am sure this will not be the last time we address this issue, so I conclude by thanking the right hon. Member for North Norfolk for securing the debate and thanking all hon. Members who have shown an interest. This debate bodes well for our discussions over the coming months on these vital subjects.
It is vital that we continue to work closely with NHS England, local authorities and key stakeholders to improve the system for everyone. There is a lot of work to do and, although the direction of travel in some respects is positive, as with all these things, we are all less patient than we would like to be.
I hope the right hon. Gentleman can appreciate that the Government and NHS England are very much aware of the challenges in this area, both in his constituency and in the constituencies of other hon. Members. I am confident that the steps we are all taking to improve the system are the right ones and will deliver an improved experience for patients, families and carers based on a more consistent application of eligibility and variation.
Question put and agreed to.