Terminal Illnesses: Continuing Healthcare

Jim Shannon Excerpts

Wednesday 13th June 2018 Westminster Hall

[Chris Evans (Islwyn) (Lab/Co-op)]

I beg to move,

That this House has considered the Government’s policy on continuing healthcare for people with terminal illnesses.

It is a pleasure to serve under your chairmanship, Ms McDonagh, in this important debate this afternoon.

I rise to speak today as a member of the Public Accounts Committee, which in November last year held an inquiry into the National Audit Office’s report on NHS continuing healthcare funding. Although this particular issue concerns health policy in England and I am, of course, an MP for a Welsh constituency—you can probably tell that from my accent, Ms McDonagh—I secured this debate in my capacity as the secretary for the all-party parliamentary group on motor neurone disease, in which I have worked closely with the Continuing Healthcare Alliance, an organisation comprised of 17 different charities, including the Motor Neurone Disease Association and Parkinson’s UK.

Many of those charities’ long-held concerns were addressed in both the NAO report and the PAC inquiry, and we were all hopeful that the Government would finally address the many issues surrounding continuing healthcare, and rectify them to make the lives of those who suffer from ongoing or terminal illnesses that little bit easier. However, I am saddened to be standing here today to say that, judging by the Government’s response to the PAC report, that was wishful thinking. The PAC set out a number of recommendations for the Government with regard to continuing healthcare, which the Government have yet to fully take on board. That is disappointing, but unfortunately—I am sad to say—not surprising.

One of the key issues highlighted by the NAO and the PAC was how the clinical commissioning groups—CCGs for short; they are responsible for administering and approving eligibility for continuing healthcare—are not being held to account for delays in assessments and eligibility decisions. In 2015 and 2016, a third of patients had to wait for longer than 28 days for a decision on their eligibility for continuing healthcare. The Government said in their response to the PAC report that 80% of assessments are conducted within 28 days, and that they will regularly monitor the effectiveness of the assessment procedure. That percentage—80%—sounds huge, but I wonder and worry about the other 20% of patients who are not receiving such assessments.

However, the NAO report demonstrated that existing mechanisms are not effective in addressing CCG performance. Across the CCGs, the percentage of patients judged as eligible for continuing healthcare, or CHC, ranged from 41% to 86%, which suggests there are differences in the way each CCG interprets the national framework for eligibility. The Government are yet to address this variance and provide more concrete proposals for changes to the process.

What is more, the Government seem more concerned with hitting the 28-day decision target rather than with assessing whether judgments are accurate and in line with the national framework. They must be careful to ensure that the quality and accuracy of decisions are not compromised by the drive to meet targets. Although it is important to ensure that patients are not kept waiting too long for a decision on their eligibility, we must make sure that those in need of help are not deemed ineligible, so as to hit waiting time targets.

The PAC also recommended that the NHS and the Department of Health and Social Care do more to raise awareness of the availability of CHC among patients, their families, and health and social care specialists. According to the CHC Alliance, two thirds of people do not find out about CHC until very late in their journey in the health and social care system. Furthermore, a 2016 survey of MND patients found that although 30% of respondents were receiving CHC, 33% were not aware that it existed. As many will know, motor neurone disease is particularly cruel; most people who are diagnosed will pass away within 18 months of diagnosis.

The Committee asked the Government to update it on how awareness of CHC has been raised among the relevant groups. The Government have said they will carry out joint work with the NHS to understand awareness gaps and how the process for determining CHC eligibility is understood, with a plan of action ready by summer 2018. As of this month, June, patient organisations are still waiting to be approached regarding levels of CHC awareness.

Another area in which the Committee required more clarification from the Government was on how they plan to improve the quality of the assessment tools and staff and assessor training. The Committee has also asked the Government to be clear on how they plan to monitor the impact of changes in reducing variations in eligibility rates between CCGs. Rather than give a detailed response, the Government instead chose to refer to the recent changes made to the national framework. They also said they would carry out the work providing more insight into CCG variations by autumn 2018, but it remains to be seen whether they will keep to that deadline.

The CHC Alliance has reservations about the changes. The eligibility assessment tools include the decision support tool, which is a checklist for eligibility. That tool lies at the root of the eligibility issues with CHC, yet only minor cosmetic changes have been made to it. There are also issues with the definitions of severe and priority conditions in some care domains. They can lead to the impression that CHC eligibility is for terminally or morbidly ill patients only, which is simply not the case. Such misinterpretations of the framework contribute to the very low conversion rate between the checklist and those receiving eligibility. The rate was only 29% across 2015 and 2016, according to the NAO report.

There are further concerns surrounding the Government’s proposals to stop CHC eligibility decisions being made in acute or specialised hospitals. That will seriously disadvantage those patients in need of long-term care in such settings. For example, a spinal injury patient in a specialised spinal hospital could be at risk of losing out on CHC funding if the Government choose to remove eligibility assessments and decisions from those institutions. I urge the Government to seriously reconsider that proposal, as it does nothing to help those in desperate need of CHC funding and causes unnecessary worry and concern for their families, friends and carers.

I mentioned the inconsistency of approval rates for eligibility across CCGs. The Committee recommended that the NHS should establish some sort of oversight process to ensure that eligibility decisions are made consistently within and across CCGs, as well as setting out criteria to identify and investigate outliers in eligibility decisions so as to generate a greater understanding of the variance in eligibility outcomes.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman on securing this debate. There is no guiding framework for continuing healthcare in Northern Ireland, which makes getting a CHC assessment particularly challenging. It is unlikely to be offered or mentioned by someone’s local health or social care team, but it is definitely available. Does the hon. Gentleman agree that we need a UK-wide change in how CHC is managed for those who are terminally ill, instead of expecting phenomenal charities such as Macmillan to stand in the breach?

[Chris Evans]

I thank the hon. Gentleman for his intervention; he is always insightful. My experience is the same as his. Most people do not know about CHC. That is not just an issue for the Northern Irish, Scottish or Welsh Governments or whoever; it is a UK-wide issue. We are dealing with people who are near the end of their time on this earth, and we have a duty not just as politicians, but as human beings, to ensure that their time is as comfortable as humanly possible. I think the whole House would support us on that.

The Government’s response has been to try to dodge responsibility by saying that the NHS already has assurance mechanisms to hold non-compliant CCGs to account. Those are mechanisms that the NAO report demonstrated are not effective in eliminating unwarranted variation when it comes to eligibility decisions. The NHS has not been addressing CCGs’ non-compliance with the national framework. The Government need to help and encourage them to do so to ensure that accurate decisions are made and that people in need of help are not left struggling without it.

Perhaps most concerning of all, there has been little substantive stakeholder engagement with patient organisations representing those affected by inconsistencies and variation in eligibility outcomes. In my discussions with a range of organisations, that is the No. 1 problem. They do not believe they have been asked what they think of how the present system is working. The Government did not lead a full public consultation for the national framework revision, and the closed engagement process has left patient groups feeling unhappy, ignored and out of the loop. The revision was conducted over a very short period, with a very select group of consultees. It is little wonder that the changes made to the framework are so unsatisfactory given that those in receipt of care have not been consulted on what changes need to be made.

All the pledges to improve the framework and the eligibility process mean nothing if the changes are not properly funded, so it was disappointing to see the Government provide such a vague breakdown of the costing of efficiency savings in their response to the PAC inquiry. They expect to reduce spending by £855 million, yet no details are provided as to how those large cost savings will be achieved without limiting either eligibility or the support provided. The Government believe they can save £122 million by improving the commissioning of care packages and a further £293 million by allowing CCGs to locally deliver improvement initiatives. However, those savings in practice may refer to cuts to care packages. We need further assurance from the Government that care packages and support will not be sacrificed to save money. Sometimes, there are issues wider than saving money.

Overall, the Government’s response to the NAO report and the Committee inquiry is disappointing and lacklustre. As with many aspects of the Government’s health policy, it seems that they view the revisions to the framework as a money-saving project, rather than considering the detrimental impacts the changes may have on the patients and their families who are in desperate need of CHC funding. It feels as though the Government have learned nothing from the report and have taken none of the recommendations on board. I am sad to say that that seems typical of the Government in so many areas.

The response was not good enough. Further clarity is needed on the issues. I have mentioned that the changes need to be set in concrete. Through my role on the all-party parliamentary group for MND, I have met several MND patients. I have to pay tribute to the bravery of those who are suffering with MND, as well as their families. I pay tribute to their passion to help others. If anyone wants to see humanity in action, I ask them to go along to a Motor Neurone Disease Association meeting. What strikes me is that it is not about them or the sufferer; it is about the people who come after them.

All my life, I have counted myself as a socialist in the belief that I have as much responsibility for the person sitting next to me as I have for myself. I honestly believe that I see that all the time in the Motor Neurone Disease Association. I can only pay tribute to those people from the bottom of my heart for the work they do for families and for carers. Even after the ones they loved have gone, there are still people out there fighting for those with MND. I know the Minister is compassionate; I have often been very impressed with her work in this Department and as a Minister for Justice in a previous life, and I know she cares. I hope that today she will show that the Government she represents really care about these people.