Sarah Tilsed, James Cooper and Professor David Croisdale-Appleby OBE gave evidence.

We will now hear oral evidence from the Patients Association, Together for Short Lives and Healthwatch England. We have until only 3.10 pm for this panel of three people. Would you be kind enough to introduce yourselves for the record? Let us start from the left.

James Cooper:

Hello. I am James Cooper, associate director of external affairs and membership at Together for Short Lives.

Sarah Tilsed:

Hello. I am Sarah Tilsed, head of partnerships and involvement at the Patients Association.

Professor Croisdale-Appleby:

Good afternoon. I am David Croisdale-Appleby, chair of Healthwatch England.

Q My first question, which is about specialist commissioning, is for James. Your charity is involved with palliative care for children. What effect do you think the changes in the Bill will have on the commissioning of very specialist, low volume and high complexity services?

James Cooper:

I think that there are both opportunities and threats for families of seriously ill children and the professionals and services that provide them with palliative and end-of-life care. When we talk about seriously ill children, we mean children with life-threatening conditions, life-shortening conditions and severe medical complexity. They have a range of emotional, psychological, social and physical needs that need to be met across health, education and social care services.

Part of that care involves specialist children’s palliative care, which is predominantly provided at a regional level by teams led by specialist paediatric palliative care consultants. They often have Grid training, and there are not many across the UK—there are only about 24 whole-time equivalents. They are often based at children’s hospitals or children’s hospices and are often co-located across both. These specialist teams also comprise senior nurses and other specialists involved in emotional, psychological and practical support for families.

Our issue is that these services are often quite patchily commissioned at the moment; even though there has been a specialised children’s palliative care specification from NHS England since 2012, we think that money and commissioning has flowed to these services to only a very limited extent. For example, we have a successful service in the east of England, which provides 24/7 end-of-life care at home for seriously ill children, supported by nurses and these specialist consultants. But the provision is really patchy across England.

The Bill presents some opportunities through the additional powers for the offices for pan-integrated care board commissioning—the OPICs—to mandate ICBs to work together to commission these services. We would like to see that. However, because of the small numbers but highly complex needs of these children, the services often need to be planned and funded at a regional level, although they often are not.

We are concerned by the increased devolution to ICBs because of the extent to which other children’s palliative care services—the core services—are being commissioned at the moment. We have a range of evidence that shows that it is possible in some areas for that care to be commissioned well—for example, 19% of ICBs currently commission end-of-life care for children at home 24/7, provided by nurses and specialist consultants. However, at the moment ICBs are not taking on their full functions and implementing national guidance.

I would like to see much more rigour and accountability from the centre, the Government, to make sure that such specialised commissioning works for this particular group of complex children and families.

Q My second question is for Professor Croisdale-Appleby. The CQC has been reported to be in a relatively difficult place, facing challenges at the moment. It is being asked to take on event healthcare supervision and roll the HSSIB within it. Is that asking too much?

Professor Croisdale-Appleby:

Obviously, I am not here to speak on behalf of the CQC, although I am a non-executive director of the CQC. You are quite right that it has been in a challenging position, from which it is taking very substantial steps to recover, principally in changing back to a system of having chief inspectors who are very knowledgeable about their particular area of expertise that they can apply. The Department has asked the CQC to take on additional responsibilities in its regulatory capability and, to some degree, in an inspectorate capability. I cannot really agree that it is too much for the CQC to take on, but a substantial amount of work is certainly being added to the CQC.

Q What are your thoughts on the abolition of Healthwatch? Does Healthwatch have teeth? Does it influence people? Is it influencing the decision makers? Could it be reformed or should it be abolished?

Professor Croisdale-Appleby:

It is quite interesting to think that we have had 52 years of independent organisations representing the patient voice, as well as that of the carer. I think everyone here will be aware of it, but there was a step change in impact after the Mid Staffs situation, when Healthwatch—both Healthwatch England and the 153 local healthwatch bodies—was set up. We have produced over 20,000 reports; if anyone is interested in accessing any of them, we can certainly provide access by the end of the week.

Since I joined Healthwatch in 2023, in my view it has been very successful in reaching out to those communities often referred to as “difficult to reach”—diasporas and so on, where we all know the health inequalities are often the deepest. I think Healthwatch has been very successful in ensuring that we have not just listened to the easy-to-reach groups but deliberately sought information and views from those other parts of our society, which form an increasing part of it.

The research being done with those communities has recognised that there is quite often an investment of some six months for one of our people go into a particular community—whether a cultural community or an ethnic community—and win the confidence of the people so that they actually talk to us about the problems. I have to ask how that depth and focus is to be replicated under the arrangements suggested in the Bill. That is my extended first point about Healthwatch.

I think we have had a lot of impact, and I use the word “impact” as a researcher myself. Impact is measured by the change that you make. When we produce reports, whether national or local, we include recommendations. The important thing is that we always follow up on those recommendations and ask, “Are they being implemented? Are they being listened to?” Each year, we produce a report that says, “What change has occurred as a result of the recommendations that we make?”

I think that is extremely valuable, because it is about independence and holding organisations to account. Clearly, those organisations report in line function to the Department of Health, NHSE or local authorities, but we are not only the ears of the patient and the carer; at times, we hold feet to the flames over whether something sensible is being done. We do not give up on this; we pursue it down the rabbit hole.

Q Ms Tilsed, you have been very patient. Before I call the Minister, do you want to add anything to what has already been said?

Sarah Tilsed:

Professor Croisdale-Appleby said absolutely everything that I was about to say, so I will make just a few points without going back over everything.

The main thing is that we need to make sure that this does not divert attention from the main priorities, which obviously relate to patients: timely access to care, clear communication and involvement in decisions about their treatment. As the professor said, we need a truly independent patient voice. Abolishing healthwatches creates a fragmentation of patient engagement responsibilities across ICBs and local authorities. The evidence we see every day consistently shows that patients are not feeling informed, involved or treated as equal partners in care.

We need to ensure that any replacement model is, as Professor Croisdale-Appleby said, genuinely independent, transparently accountable and resourced equally across the country, to ensure that we do not lose sight of the people it is supposed to serve. Trust is really important here, and patients trust independent organisations. I feel that that trust might be lost in local communities.

Lastly, this is, as Professor Croisdale-Appleby said, about reporting. We need to consider the way that patient feedback data is reported, and ensure that that is not getting lost. Themes and demographics still need to be included to make sure that we know who we are listening to, and that services are provided for those who feed back and those who do not—usually, it is those who are not feeding back who we really need to consider.

Thank you. Those opening comments were extremely helpful, but I now ask for brevity in your answers, as several Members wish to put questions to you.

Q As we have heard, despite 52 years of independent patient voice, 20,000 reports and many hundreds of recommendations, we have some of our worst ever patient satisfaction. We are also now more than 10 years on from the Francis report, but recommendations are not being followed through locally or nationally. It is pretty clear that the landscape does not work. Like many other Committee members, I represent communities that are not in that space and need to be represented in new way. What are the barriers to that? How can the single patient record, and the information we can create in different ways, help to reverse what is a shocking landscape for patient experience and patient voice?

Professor Croisdale-Appleby:

Sorry, I had some difficulty in hearing the question, but I hope I heard it correctly. Was it about the patient record?

Yes.

Professor Croisdale-Appleby:

Fine. The Government’s move to the integrated patient record is absolutely excellent. Most of us have wanted that for a very long time, but we also recognised the IT difficulties in doing it, as well as the question of security. However, as digital has advanced, we have nutcrackers that we did not have before to crack that particular nut. I can but support that move.

From the point of view of the things that really matter, the ability of a person to feel that they can tell their story once—not time and again—comes up all the time in our research. With great respect to everyone here, we are very capable of standing up for ourselves and insisting that we get answers, but the people I deal with and have the privilege of representing are often not in that position at all. They are overwhelmed when they are repeatedly asked the same question, often in a language—medicalese, if you like—that they do not really understand and feel threatened by. The single patient record is going to go a long way towards helping with that situation. It is not the complete answer but at least it does the hygiene part, as opposed to the motivator part, very well.

Sarah Tilsed:

It is an excellent initiative—1as the professor said, we have been calling for it for such a long time—but we really need to consider the consent and data elements. A lot of pieces of work that we have done with patients shows that people are happy with their data being shared for these electronic records, as long as they are transparent and patients know what is being done with their data—that is a really important point.

The care.data initiative and general practice data for planning and research—GPDPR—were great, but unfortunately, because they did not have genuine patient involvement right from the beginning, they failed. We need to ensure that the SPR does not fail. In terms of reaching underrepresented or less-heard communities, we need to ensure that we hear from those people straightaway. How do they want this to work? Do they want to know how their data is being used? How can we ensure that people who do not use the NHS app are involved and that their data is being shared? How do we approach people who are understandably very hesitant about digital technology and electronic records?

Q Sarah, the Patients Association has said that it is concerned about this reorganisation distracting from patient priorities. Could you elaborate on where those concerns come from and what should be done to mitigate that?

Sarah Tilsed:

I said a lot about that earlier, in response to a previous question, so I am not sure how much more I have to add. I think my main point is that we must not divert attention away from the urgent priorities that patients are facing at the moment, ensuring there is a truly independent patient voice and trust—there is a lack of trust among patients, as I keep saying. How are we going to ensure that the reporting system is there for this?

Ultimately, patients need reform to lead to better care, not simply to different structures, which I fear is what often happens. Sir Robert Francis said, following the Mid Staffs situation, that patients must come first. Throughout the passage of the Bill, the Patients Association question will remain simple, and we will ask it time and again: will these changes actually help patients to receive better care, and how will we know if they do? That is the first principle to come back to. When everything is happening—all this restructure—how are patients going to be affected and involved in it?

Q My second question is about Healthwatch. The Committee heard this morning about the variability of Healthwatch’s effectiveness at a local level. What could be done to ensure that the best and most effective Healthwatch practice is rolled out across the whole of England?

Professor Croisdale-Appleby:

Thank you for that question. One of the reasons there is a difference or variation among the 153 is that the amount of funding is very different. Some of them get 10 times the funding of others, which makes a difference to the scope of what they can do. What it does not allow—and I think Healthwatch England has an important contributory role in this—is a change in the quality of the way in which the research is done.

One of the things that I have encouraged very strongly—although it happened before I joined Healthwatch—is the use of qualitative as well as quantitative data. The system is awash with quantitative data, but that does not necessarily cut through to the way that people are, the way they think, the lexicon they use, the concepts they use in communication etc. One of the great strides that Healthwatch England and our 153-member network have made is the intelligent use of qualitative data. That is an art in itself—I would like to think that is a science, but it is certainly an art.

It would be easy to remedy that, in the sense that if the funding were more equitable, some of that variation would disappear, but the variation is not in the quality, the effectiveness of the listening or the ability to look thoroughly at the impact, and it does not affect the fact that the organisations concerned are held responsible for what happens to the recommendations in terms of implementation. That is uniform across the system—it is just the amount of it that will vary naturally, because of the differential funding.

To go back to the single patient record, I see huge potential—at least in my Constituency, where we have real challenges with GPs and hospitals not talking to each other or sharing information. Nor do trusts and local authorities across Buckinghamshire, Bedfordshire and Hertfordshire share that information. Sarah has touched on this a bit already, but I am interested to hear from our other witnesses on how they think the single patient record would improve patient experience, and on how we would go about building public understanding and trust in a new systemQ .

James Cooper:

There are some big opportunities in the single patient record, with the caveats that Sarah mentioned on data governance and consent. For families of children who are seriously ill, it presents huge opportunities, as I said earlier, because of the complexity of their needs. Often, huge amounts of information need to be conveyed to any professional who the children come into contact with, wherever that is across health, education or social care.

Many professionals have a long-standing relationship with such families, whether they are NHS community children’s nurses, consultants with a speciality in the child’s condition or children’s hospice teams, but families often need to access emergency unplanned care, perhaps in the middle of the night or at weekends. In those instances, when they speak to paramedics and emergency doctors, it is imperative that they can convey the information as quickly as possible. In those instances, I can see huge benefits.

With issues such as advanced care planning, to reflect the needs and wishes of those families, in particular as the child is coming towards the end of their life, I think it is critical that the whole range of professionals involved in the care of children has access to that information. I will welcome much more clarity from the Government about when the families will benefit from that particular initiative.

Professor Croisdale-Appleby:

May I add a short comment?

By all means.

Professor Croisdale-Appleby:

We have to recognise that a tremendous amount of work is done in the health and social care system with people who have multiple comorbidities—not just one thing, but a number of things that often interact together. Without a single patient record, we can find that a consultant or a GP has access to only one part of that multiple comorbidity, as it were. That can lead to all sorts of unforeseen errors. I think that that is an important point to make about the great advantage that we can get from a single patient record.

Professor Croisdale-Appleby, the local healthwatch on the Isle of Wight has proven invaluable in amplifying patient voice, gathering patient experience and helping those who are democratically elected—MPs and councillors—to hold health leaders to account. My concern about that function being folded into the ICB is that the ICB has often been on the sharp end of critical analysis by Healthwatch, and so the ICB will end up marking its own homework. We will lose the critical voice that has, I am sure, led to better decision making. How can we possibly resolve that fundamental issue, if Healthwatch is folded into ICBsQ ?

Professor Croisdale-Appleby:

You make a pivotal and focused point. The independence is vital, not just because of the quality of what Healthwatch produces, but because of the confidence that it gives people that they are speaking to an independent organisation. In the background, some communities distrust being critical about the care that they receive in case it rebounds on them. If the same organisation is responsible for marking its own homework, as you put it, that problem will be much greater than it has been in the past. In terms of what to do about it, I think that you stick to some basic principles. If we are moving forward positively, we have got to be locally driven. We must reach out to communities. They will not reach into us; we have to reach out to those communities and the individuals within them.

I mentioned the value of qualitative evidence. It is not always easy for big institutions to go through all the work of evaluating qualitative work. It is easy to look at quantitative statistics, but the patient voice must be highly visible and central to policymaking. That was the basic idea behind the Bill: it would be about the patient and the patient voice, putting the patient right at the centre of the multiple discourses. As my colleagues have said, we should be totally transparent about priorities, impact and holding people to account. If all five of those principles are followed, it will work. If they are not followed, it will not.

Sarah, you mentioned that the patient should be the centre of all this. I do not think that anybody disagrees—including any politicians—that making these changes is in the best interest of the Q patients. However, many changes have happened over the decades, but data for the last 10 years shows that patient safety incidents and complaints are steadily going up, so those changes have not made any impact on patient care, safety or experience. We need to do something here.

After each incident, there is a recommendation or an action plan, but clinical staff or patients do not have much involvement with those and do not see any difference. Healthwatch helpfully finds the issues, but it may not actually go back and see what changes are made following its recommendations. The CQC physically goes into clinical areas to see the difference, and has the power to take action against those responsible, so is it not a good change that more accountability will sit with the providers, and the CQC—or local authorities and ICBs—can take action against them?

Professor Croisdale-Appleby:

Forgive me; you asked several questions. Which would you like me to start with?

I asked whether it is not a good change to streamline these bodies so that fewer of them have powers to take action like the CQC?

Professor Croisdale-Appleby:

There is always a danger, if I may say so, in the use of the word “streamline”. We have to think what is lost in the streamlining process. I do not want to repeat what I have said and waste your time, but one thing that is important is whether there is a golden thread running through seeking out and listening to patients’ views, putting those together in a coherent form, making recommendations for improvement—that is what we do all the time at Healthwatch—and then holding people accountable for that. I remember Penny Dash saying that one of the points of the Bill is to bring this closer to those who commission and those who deliver. I am not sure that it necessarily takes it closer to that simply by embedding it—as a colleague asked earlier—within the formal structure. There is a danger in that that the patient voice is often a spiky voice. As a former chair of hospitals and so on, I know that patients do not always say things that are convenient. That point about independence is vital. If I may, sir, I take slight issue with your term “streamlining” and would try to take that apart into the different components that might comprise it.

Sarah Tilsed:

I cannot comment too much on the CQC, but on the point about a rise in complaints but nothing seems to be happening, we are finding that patients do not want to complain any more because they are finding that they are getting a worse service of care. That might be a slightly separate issue, but considering that there are so many complaints and that patients are not wanting to complain because they are scared, I do not think that streamlining is the right way. We need an independent voice that will focus solely on the patient voice, which I think we are completely losing at the moment.

Q On the streamlining point, you have articulated very clearly why you think it is inappropriate, as have members of this Committee, and most of the evidence we have received suggests that it is not appropriate. What do you think is the reasoning behind the Government’s real push for this, when the evidence against it is so clearly strong? Is it simply that they want to save money, in your opinion, or is there an alternative motive?

Professor Croisdale-Appleby:

If we talk about money— I will be quantitative here—Healthwatch England currently costs £3 million per year and the network receives £25 million per year. To people like me, £3 million and £25 million is a lot of money, but in the greater scheme of things it is not a significant amount, particularly when you think what is being produced for it.

I cannot speak appropriately, in my role as chair of Healthwatch, about Government policy. It is not my job to do that; it is the Government’s job. If you want to ask me a question on a purely personal basis so I can step outside of that role, I will be happy to answer, but I always have to draw a very distinct line on anything that I say. Everything so far has been said in my formal position as chair of Healthwatch as opposed to any personal views, because I certainly do not want to comment on Government policy.

Let us see if either of your colleagues would like to be less cautious. Mr Cooper?

James Cooper:

The key here is making sure that the independent patient voice is well-resourced, is held accountable for doing its job and works particularly for those the system finds it hardest to reach. Families of seriously ill children definitely fall into that bracket, so the interest of Together for Short Lives and the children’s palliative care sector is certainly in making sure that those structures do that.

I would like clarity on a few views that we have heard, not just in this session but in previous ones. There is one mindset that says that by bringing patient voice into ICBs, they are going to be marking their own homework. Equally, I think about places like Wolverhampton, where we have such baked-in inequalities and we simply have not shifted the dial for far too long, as can be seen in the differences in life expectancy. I have also heard that if you want to bring real change, it is best to bring that change from within the system. I will open that up to you, SarahQ .

Sarah Tilsed:

I disagree with that. It is fine for ICBs to be involved, but it is all about local partnership working—bringing in the voluntary sector and really going into the community, and doing it in partnership. That is the only way of doing it. If you are bringing it into the ICB, consider how much funding there was when Healthwatch was doing it and—I do not want to repeat this point, but I will—the fact that it will be marking its own homework. For me, it is about partnership working going from the community—not within the system and not within the NHS, but going out to the community and feeding inwards.

I know that in this conversation some have highlighted that patients have stated that their experience has worsened or not improved, but I would argue that is not a Healthwatch failure; it is actually down to the NHS or ICBs not acting on Healthwatch recommendations. It seems to me perverse to give that voice to the organisations that are actually part of the problem through not acting.Q

As a Minister, I was on the receiving end of some quite sharp recommendations from Healthwatch, but they were always constructive. Whether right or wrong, my fear is that this measure risks a perception among patients that it will be down to NHS managers and ICBs essentially to make recommendations that reflect their priorities, rather than the priorities and voices of patients. Professor, even if the principles that you have enunciated that might mitigate that risk were applied to the new model, are you really confident that they could mitigate the risk to patients’ confidence that their voice is genuinely and independently heard, loud and clear, however unhelpful it is perceived to be by bits of the NHS?

Professor Croisdale-Appleby:

I cannot be confident of that, because we are in the foothills, not up the slope, and the details have not been given. ICBs have received something approaching a 50% cut in their running costs. I will not comment on the appropriateness or otherwise of that, but one has to be realistic and think about how high a really informed patient voice—particularly one that seeks out the views of both communities and individuals where the health inequalities are the greatest—will be on the priority list. I would question that, but I will leave it there.

Q You all represent patient organisations in different ways. I would like to put this in the context of the 10-year plan and the shift to involve patients and communities in shaping services. From your patient perspective, how can we best support ICBs, local authorities and other people to drive that change for patients?

James Cooper:

It is key that ICBs are given that support. In the conversations that Together for Short Lives and the services we represent have with ICBs, we certainly get the sense that they want support. They want to know how much they should be funding certain services, and they want to know how to plan. A lot of guidance is already out there, particularly in children’s palliative care, where we have service specifications and NICE guidance and quality standards—there is even a legal duty to ensure that ICBs commission palliative care for children and adults. That accountability and support from the centre, and making sure that resource is there, is key.

Q Do panel members have any further comments?

Professor Croisdale-Appleby:

I just want to reassure colleagues here that Healthwatch England and the Healthwatch network are still fully functional—I think that is important for you to know. Although we are sensibly on a reducing trajectory in line with the Government’s abolishment plans, we will maintain that full functionality and the ability to meet our formal mandate right through until the Bill is enacted, and until the guidance that will probably follow is in place. I just wanted to reassure the Committee of that.

Thank you very much. On that note, Mr Cooper, Ms Tilsed and Professor Croisdale-Appleby, thank you very much for attending, and for your guidance and wisdom—we appreciate it.

Professor Croisdale-Appleby:

Thank you for the opportunity.