Cerebral Palsy: Adult Care Transition

Helen Whately Excerpts

Thursday 30th March 2023 Commons Chamber

[The Minister for Social Care (Helen Whately)]

I thank my hon. Friend the Member for Blackpool North and Cleveleys (Paul Maynard) for his speech this afternoon. We all draw on our own experiences in this House, and rightly so—in fact, I believe that this House is all the better for its diversity, whatever form that is in—but drawing on experience takes courage, as does doing a job in the public eye. My hon. Friend demonstrated his double courage this afternoon by telling us, as he has told me before, how he has—among other things—been mocked for his own cerebral palsy and asked, for instance, “Why are you drunk?” when he is allergic to alcohol. As I think he suggested, the Whips might wish that more of us were in that boat and always clear-minded when voting, although maybe not. I thank him very much for facing down the mockery that he might sometimes experience. It is completely wrong that he faces that, and I have huge respect for what he does in standing up to that—I wish that he did not have to. I thank him, because I see what he does in his work for his constituents and in the many areas of interest that he campaigns on. Specifically today, he has drawn on his personal experience in his once-a-Parliament speech on cerebral palsy.

I also praise and thank the APPG on cerebral palsy for its excellent report, which includes a clear set of 10 recommendations for us in Health and for other Departments, including the Department for Education and the Department for Work and Pensions, on the transition from childhood to adulthood for young people with cerebral palsy. A number of the recommendations that my hon. Friend referred to are specifically relevant to health, including the importance of having a roadmap for young people with cerebral palsy; the need for a dedicated lead professional looking out for them; the importance of empowering young people and their families to become self-advocates for what they need; the call for dedicated budgets; the call for regional hubs in integrated care systems bringing together multi-disciplinary teams of professionals; and the need for healthcare transition pathways and for upscaling cerebral palsy registers. Those are the ones that sprung out to me from that list. On some of those I can assure him we are making good progress; for others, the best thing I can do is take them away and make sure I get him a fuller response than I am able to give today.

My hon. Friend and the report argue compellingly for further action and focus on supporting young people with cerebral palsy on their transition from childhood into adulthood. I say that because we know that that transition can be very challenging for those of 100% fitness. The transition from childhood into adulthood is a mixture of exciting and daunting. The extent to which it may be exciting or daunting very much depends on someone’s circumstances, but it can be particularly daunting if they have disabilities. As my hon. Friend said, one of the challenges with cerebral palsy is the extent to which it is understood, including among experts, and the huge range of impairments that people might experience. Some can live their life completely to the full, as he demonstrates, and others face far greater challenges in their lives. In those circumstances, it is all the more important for us to make sure that, across all public services that are there to support us through our lives, there is the right support for that crucial transition from young person support into adult services, so that somebody with cerebral palsy, whatever the level of impairment of what they can do their lives, can truly fulfil their potential and lead a full and satisfying life.

I will touch on a couple of things that are specific to the healthcare side of the support for people with cerebral palsy. As I am sure my hon. Friend will know, there is National Institute for Health and Care Excellence guidance on the transition from child to adult services and specific guidance for young people with cerebral palsy. The NICE recommendations include developing clear pathways for transition and providing a named support worker for individuals. Those two things align closely with some of the recommendations in his report.

However, an obvious question follows the fact there is NICE guidance, which is, as my hon. Friend might well ask, “Is it being implemented, and to what extent? Where have these recommendations been followed?” I, too, want to know the answer to that and to be able to give it to him. I was not able to get that answer before I came to the Dispatch Box. I am therefore seeking an answer from NHS England, and I will write to him as soon as I have it. That answer will tell him the extent to which those recommendations have been followed and are in place. I anticipate that we may see variation around the country. Where we have variation, the important thing is to know where practice is good, and recognise that, but, where there is a gap in services or provision, to ensure that that is also known about and to step in.

The NHS long-term plan, published in 2019, recognised the problem of transition from children’s to adult services. That plan set out the aim of moving towards

“service models for young people that offer person-centred and age appropriate care for mental and physical health needs, rather than an arbitrary transition to adult services based on age not need.”

NHS England has updated me on this work. It has assured my Department that it is working to ensure that no child or young person will be lost in the gaps between children’s and adult services. Its children and young people transformation programme is developing resources to this end, including guidance that supports the design of transition pathways.

Again, we hear that NHS England appreciates the problems and is working to improve the transition, given the risk of there being gaps between children’s and adult services, and that further guidance is being developed. We are talking about transition pathways, but, again, it would be perfectly reasonable for my hon. Friend to ask where that has got to: where is that guidance, and to what extent is it being followed in practice? On that, again, I will write to him to give him a full answer, because as far as I am concerned it is no good that we should say there is guidance and recommendations. What is also—in fact, even more—important is what is happening in practice.

Specifically, one of the things in the APPG’s report was about personal health budgets and the need for people to have their own dedicated budget. On that, I believe we are making good progress. This applies not just to people with cerebral palsy, but to those with other health conditions. Across the country, there is access to personal health budgets and, more broadly, to personalised care approaches, which is an important way of giving people choice and control over their care.

I have spoken directly to people who have told me what a difference having a personal health budget is making to their lives. We are on target to reach our commitment of 200,000 personal health budgets by March 2024. That said, I have no doubt that we have further to go, as we work towards that target and beyond, in making sure that everybody who could benefit from having a personal health budget does indeed have one. Again, I know there is variation across the country on the extent to which people have them. Where there may be bureaucratic barriers to people having a personal health budget, that is something we should continue to look into, because they can make such a difference to people being able to get the care that they feel they personally need.

Talking about the importance of knowing who has cerebral palsy and knowing who needs that support, my hon. Friend mentioned how he did not receive any follow-up care after he was 13-years-old until very recently. He said how valuable that has been, but there was clearly a great big gap when he might have benefited. As he mentioned, we have the cerebral palsy integrated pathway database, which since 2019 has been supporting the development and extension of registers across all regions in England. That database is included in the NHS England plans for ongoing central funding of clinical databases. It is therefore important that we continue to build up the records, particularly of young people with cerebral palsy, and make the most of that database; as my hon. Friend said, we must not only have the database but make use of the data in it, because when we know who has cerebral palsy we can make sure they get the support they need. I am going to look into that to make sure we follow through on our aspirations.

I will take away the other points in the clear list of recommendations relating to health in the all-party group’s report and the areas I have covered in terms of the long-term plan and the National Institute for Health and Care Excellence guidance, and will get back to my hon. Friend with more details on the progress being made. The all-party group report is clear and compelling, and it deserves a full response on the actions being taken against the recommendations and the commitments already made to improve the transition for people with cerebral palsy and other health conditions as they transfer from childhood into adulthood. I want to express my gratitude to all involved in the work of the all-party group, and I specifically want to thank charities, including Action Cerebral Palsy, that work tirelessly to support and advocate for those living with cerebral palsy.

I want us to make sure the transition from childhood to adulthood is exciting for those living with cerebral palsy, rather than daunting. I do not want health conditions and disabilities to hold anyone back. I want to make sure the right health, educational and professional support is available to unlock the abilities of everyone so they can lead a fulfilling life to the full.

I thank my hon. Friend for securing this debate, for making his compelling arguments, and for bringing his own experience so powerfully into this Chamber to motivate all those listening, including me at the Dispatch Box, to do more and do better. I will of course be delighted to meet him, as he asked, to talk about this further. By the time we meet, I look forward to being able to give him more comprehensive responses to the excellent points he raised.

Question put and agreed to.