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Cerebral Palsy: Adult Care Transition

Volume 730: debated on Thursday 30 March 2023

Motion made, and Question proposed, That this House do now adjourn.—(Joy Morrissey.)

It is a pleasure to have the chance to participate in a debate on cerebral palsy. I tend to be quite sparing in the opportunities I take to discuss this matter in this Chamber. I restrict myself to one opportunity per Parliament, so this is my effort for this particular part of the decade. So many and varied are the issues that could be covered that I could hold a debate on cerebral palsy every week of the year.

Cerebral palsy is one of the least well-understood conditions around—the incidence among the general population is the same as for Parkinson’s or motor neurone disease—and I think that it is partly because of that, and partly because of its broad spectrum of impairment, that it does not have the same profile in the public consciousness. Nor did it have, until recently, a condition-specific charity. Now, at least, I can thank Action Cerebral Palsy and the Adult Cerebral Palsy Hub for their actions and support for the all-party parliamentary group on cerebral palsy, which I chair, as well as the Cauldwell Children charity, which not only sponsors our APPG but, perhaps more importantly, supports tens of thousands of families up and down the country whose children often have quite complex special educational needs.

In this place, we often discuss issues around the transition from childhood into adulthood, so the Government recognise what a crucial stage that is in someone’s personal development. We consider it with regard to care leavers, for whom support has been extended to the age of 25, as well as to the introduction of education, health and care plans, which have also been extended to the age of 25. I think that we need to apply the same philosophy to cerebral palsy.

I mentioned earlier the broad spectrum of impairment, which is, I think, part of the problem in the way in which both Government and society as a whole deal with the condition. Eighty per cent. of those with cerebral palsy have some form of spastic motor impairment, but that is so broad that it ranges from the likes of me, who can function fine 98% or 99% of the time, to those with dyskinetic forms such as the twisting and repetitive movements known as dystonia, the slower movements known as athetosis, and irregular, unpredictable movements known as chorea, so planning for the inclusion of those with cerebral palsy in the adult world has to be, by definition, an individualised process.

The existing legislative framework is disconnected and fragmentary, and does not account for cerebral palsy as a condition in its own right. Indeed, all too often, I feel that it is bedevilled by ignorance on the part even of medical experts at times, and by a lack of common sense from providers. As those of us with cerebral palsy leave full-time education, we encounter a much less structured world where preconceptions about our abilities seem to be so much greater and, invariably, utterly misguided.

People watching the debate on their TVs will assume that I am drunk. That always happens; every time I stand up in this place and appear on TV, I get an email saying, “Why were you drunk when you appeared in the Chamber?” I personally find that quite ironic because I am actually allergic to alcohol as it is a trigger for my epilepsy. It is perhaps a good thing to have a Member of Parliament who is allergic to alcohol and can always speak and, indeed, vote with a clear mind—if only we could all manage that. Preconceptions about cerebral palsy are rife, day in, day out. I stress once again for the record that cerebral palsy is not an intellectual disability—it never has been; it never will be.

Help and advice for individuals during their transition into adulthood are all too scarce. During the course of the APPG’s inquiry into this issue, I have been consistently struck and, indeed, depressed by how policy and practice, as well as day-to-day experience, have not moved on since my own passage through education and early adult life. Indeed, the online community Cerebral Palsy Adult Advice UK made the following submission to the APPG’s inquiry:

“We have been totally overwhelmed by the number of adults joining our group looking for help because they have no idea where to start… we have been inundated by members seeking help—help that we are not equipped to direct them to, because it simply doesn’t exist.”

One young person with CP told us:

“I have to be the educator and adviser—there is still too much ignorance at every turn and an immediate assumption of my mental incapacity”.

This all leads to thwarted ambitions. The all-too-human desire to make the best of ourselves can be very hard to fulfil, given the hurdles that so many with CP face. People often ask me how I feel about what I must be missing out on in life. I get that question so often, and it really angers me. How could I have any conception of what I am missing out on? This is my lived reality day in, day out; I do not know any different. I do not feel I am missing out. I do not feel that there is any detriment to my life experience, but people always make that assumption.

There has to be a fundamental re-design of the services, rights and processes involved in the transition to adulthood. The consequence of not doing so is a failing at both an individual and systemic level of what is needed to support, equip and prepare young people with cerebral palsy as they move into adulthood and a lack of understanding of the day-to-day challenges that they will experience. Every young person with cerebral palsy must have in place a road map for their transition to adulthood that includes their education, health and care needs.

Like any good APPG report, mine has come up with a 10-point plan—I often wish we had 11 points or nine, just for a bit of variety, but there we are. As we have a Minister from the Department of Health and Social Care, my hon. Friend the Member for Faversham and Mid Kent (Helen Whately), here today, I will restrict myself to the health points. I recognise that a special educational needs and disabilities review is under way, which will consider the other points that I will not raise today.

The APPG recommends that each child and young person with cerebral palsy and their family must have a dedicated lead professional to act as an advocate, co-ordinator and support from the point of diagnosis through to the completion of their transition to adulthood. Each integrated care system must enhance the empowerment of young people living with CP by creating dedicated budgets for the individual to access the necessary resources and services from the public, independent and voluntary sectors to prevent the deterioration of their health and wellbeing in adulthood.

Every integrated care system in England should create new regional hubs of specialisms for those living with CP hosting multidisciplinary teams, bringing together experts from the public, independent and voluntary sectors. These hubs would have a specific focus on upskilling, training and recruiting specialist therapists and clinical practitioners.

The Government should make available investment in high-quality healthcare, therapy and education to unleash the potential of young people with CP, which, in turn, will reduce future costs in adulthood incurred by those living with the condition.

Dedicated healthcare transition care pathways for young people with cerebral palsy, alongside a dedicated adult service for the condition, should be in place in all nations of the UK. I have always been struck that I had no medical follow-up after the age of about 13, with no more physio and no intervention, yet that was the point at which my body was growing the fastest and my muscles and limbs were outgrowing the ability of my brain to develop them properly. Right when I needed it most, I had the least intervention of all. I only began returning to a proper form of physio three years ago, which has made an immense difference, not necessarily visibly but to my core body strength and my ability to do things that we need to do in daily life. That is why it is really important that we do a much better job at identifying people with CP, to monitor their development throughout their lives. I welcome the fact that the cerebral palsy integrated pathway is being upscaled to create cerebral palsy registers in every part of the UK. That has to be a good thing, but we must build on it and utilise that information now that it is being collected.

An estimated one in four children and young people with cerebral palsy will be non-verbal and require the use of assistive technology and alternative and augmentative communication strategies throughout their life. Preliminary research findings from Ireland have found that, while assistive technology—or ATech, as it is called—is valued, it also carries a “challenging and lengthy” funding process and high rates of abandonment without proper assessment or training. This is an issue that I have done a great deal of work on with Ministers during my time in this place, and I recognise that ATech is something that is now really embedded in the Government’s approach. I welcome the work done in the UK by bodies such as the Ace Centre to make us a world leader when it comes to ATech; I am pleased to also chair that APPG, but I will save that for what I suspect will be a future Adjournment debate. I am grateful to the disability Minister, my hon. Friend the Member for Corby (Tom Pursglove), for his engagement and support and for recognising the role ATech can play in the workplace.

All the strategies I have outlined are lifelines for young people with cerebral palsy who have challenges with motor function and verbal communication. Effective and timely access to appropriate equipment and training in the use of technology, which should start in infancy for all those who will require it, will enable the young person to engage fully within their social environment, home and school or further education community, and in the workplace. Families with young people with cerebral palsy have given testimonials to the APPG that they require expertise and support from professionals who understand how the interrelated comorbidities of cerebral palsy impact on each area of their son or daughter’s life. Parents have described the sense of exhaustion that they are driven to by having to explain their child’s condition to multiple agencies over and over again, and facing long delays for decisions to be taken and funding agreed on.

The most common proposed solution from parents and carers of young people with cerebral palsy is the creation of one-stop-shop regional centres, bringing together expert professionals: doctors, therapists, orthotists and dieticians, dentists, nurses, educationalists, and indeed anyone we can think of to collaborate and meet the holistic needs of the individual with cerebral palsy. For example, changes or deterioration in tone and postural stability related to growth may result in orthopaedic issues. Those may in turn lead to a need for changes in seating, wheelchairs and hoists, which may in turn affect access to augmentative and alternative communication or AT devices.

In its submission to the APPG, University College London Hospitals NHS Foundation Trust called for inequalities in health services for those living with cerebral palsy throughout the UK to be addressed by making it a statutory obligation for each integrated care board to provide a multidisciplinary service for people with cerebral palsy living in their area. I concur with that suggestion—indeed, I desperately await being drawn out of the hat for a private Member’s Bill one year, which I will use to put that suggestion forward as a Bill, because it sounds like just the sort of thing that would have a chance at going through. In the meantime, policymakers must put in place urgent and ongoing measurements of the capacity of local areas and integrated care boards to deliver the level of support that young people with complex cerebral palsy within their areas require, including appropriate access to doctors, healthcare and therapists.

I recognise that I have read out a very long shopping list today, but that is partly because we are starting from a much lower point than so many other conditions. Therefore, perhaps predictably in an Adjournment debate, I ask the Minister to please meet me and Action Cerebral Palsy to discuss all those issues—and more, I have no doubt. Cerebral palsy should not be seen as a condition where the prognosis is gloomy and the existence is depressing, but rather as a condition, however severe, where the individual living with it can, with help, live a productive and fulfilling life. That is what we anticipate and aim for for all our children; it should be no different for those children living with cerebral palsy. I thank the Minister for listening today, and look forward to hearing her response.

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.

House adjourned.