(10 years, 4 months ago)
Grand CommitteeRead Hansard Text Read Debate Ministerial Extracts
Baroness Wheeler
To ask Her Majesty’s Government what action they are taking to support children and young people who have had a stroke.
Baroness Wheeler (Lab)
My Lords, most of us, even if we have had first-hand experience of a family member or friend who has had a stroke, think of it as associated with older people. Indeed, when my partner, who was then 62 years old, had a major stroke nearly seven years ago, I was a bit surprised to see two patients on the stroke ward and in the physio room in their 20s and mid-30s who had had major strokes, suffering from effects just as debilitating as for an older person but, of course, with even longer-term impact.
However, later, as a member of the All-Party Parliamentary Group on Stroke, I met the amazing Eliza Cooke, a 16 year-old ambassador for the Stroke Association, who has played a very important role in developing its key campaign to build awareness of child stroke, which has inspired the debate today. Eliza, who is here today, had a mild stroke aged 10 when she was on holiday in France, where an MRI brain scan, had it been available, could possibly have prevented the major stroke she suffered 10 days later on arriving back home. She had the classic symptoms of right-hand brain stroke but, here in Britain, she did not have the MRI scan straight away, because the health professionals she came into contact with were just not sufficiently aware that children have strokes.
By the time Eliza was referred to Great Ormond Street Hospital, 24 hours later, it was too late for surgery. She was completely paralysed down her left side and her brain was seriously injured. Eliza was an in-patient at the London Hospital for four months and had good physiotherapy, there relearning to walk, but she never regained the functioning of her left hand and has a weak left arm and leg, causing her to limp. School and study have been challenging because her memory was also affected, as was her ability to process things visually. However, she is an inspirational and determined girl and, and out of all that, is now doing her AS-levels—and, moreover, wants to study politics at university.
Eliza still has physio and occupational therapy, which she needs to ensure that she retains the movement that she has, but, like other young adults with disabilities, the key question and uncertainty for her is always: will the therapy continue when I am 18?
That children have strokes is the key message from the Stroke Association’s campaign. Awareness and recognition of the possible symptoms among health professionals and the public are vital so that, as with adult stroke, care and treatment can be fast and commence as soon as diagnosis is made. Children with suspected stroke should be seen by a consultant paediatric neurologist, paediatrician or neurosurgeon and have fast access to an MRI brain scan to determine whether it is a stroke and, if so, what type of stroke it is. Late diagnosis is a major problem with childhood stroke, and failure to get the right treatment can have a devastating impact on children and their families for the rest of their lives.
Childhood stroke is, thankfully, relatively rare. It has been estimated that about 400 children and young people in the UK have a stroke each year, and stroke is one of the top 10 causes of death in childhood. Indeed, reliable top estimates suggest that as many as 1,500 children a year could be affected by stroke.
The long-term outcomes of paediatric stroke are difficult to predict. More than half of children will be left with significant long-term disabilities after stroke—some well known, such as one-sided paralysis or weakness, or problems with speech and communication, but others less known, such as difficulties of perception and awareness and psychological and emotional changes.
The causes of childhood stroke are different from those in adults, more varied and often unknown, which is why early diagnosis can be so difficult. Those strokes occur as a result of a very diverse range of conditions—most commonly, congenital heart disease and sickle cell disease. Other underlying causes are infectious diseases, moyamoya syndrome, vasculitis and blood disorders. Childhood infections such as chicken pox, encephalitis and sepsis can also be linked to stroke in children and young people. Fear of the stroke recurring is a major concern for children and families. Ischaemic stroke, caused by a clot, recurs in between 6% and 20% of all children and in more than 60% of children with sickle cell disease.
Since tabling this debate, I have met a number of parents with their children who have suffered a stroke—Eliza and her mum, Liz, and Renee and her son Ollie, who had two strokes aged 13 and 14, are here today—all involved in the raising awareness campaign. I also want to mention eight year-old Caitlin McLaughlin, who had a stroke before she was born and now has a number of different conditions, including cerebral palsy, epilepsy and severe visual impairment. Caitlin’s 13 year- old big sister Cheyenne won the carer’s award at the Stroke Association’s recent Life after Stroke awards, for her commitment and dedication to helping to care for her sister and providing her with personal, physical and emotional support.
Sarah Scott was the deserving winner of the volunteering award. Now 23, she had a stroke while in the sixth-form class at school, at the age of 18. It resulted in right-side paralysis, from which she gradually recovered, but she was left with severe aphasia, affecting her speech, reading and writing skills. As we know, aphasia causes social isolation, particularly for someone of Sarah’s age, but she has benefited greatly from NHS speech therapy, which helped prepare her for working part-time in a local school. She has also set up a support group for young adults in her home city, and organises all their activities and outings as well as visiting other stroke survivors to provide support.
These are the inspirational stories on which I wanted to focus today, to reinforce the need for concerted action on child stroke to match the huge improvements we have seen in adult stroke care and support over the past decade. Three things need to happen. The lack of awareness of childhood stroke, its symptoms and impact—which contributes to the problem of late diagnosis—needs to be addressed; there needs to be more research into its causes, treatment and longer-term effects; and there needs to be a particular focus on improving specialist rehabilitation and longer-term services, as well as the provision of information and support for survivors and their families.
The Stroke Association and other excellent charities in this field, such as Different Strokes, Sickle Cell and Young Stroke Survivors and HemiHelp, have done tremendous work campaigning for action to raise awareness and to support parents and families. Different Strokes, for example, worked closely with the producers of the TV programme “Waterloo Road” on its recent storyline about a 14 year-old boy who had a stroke at school. When Sarah Scott had her stroke in the classroom at school, her classmates recognised the signs from the national Act FAST television adverts about strokes in adults, so an ambulance was called urgently.
Action to raise awareness needs to be taken nationally by the Government as part of an integrated strategy for childhood stroke. Does the Minister agree that plans should be put in place to build on the successful Act FAST campaign on adult stroke to raise public and professional awareness? The action of Sarah’s classmates showed how the campaign could have a very positive impact on young people. Does the Minister agree that a national strategy for childhood stroke needs to be urgently developed and fully integrated into the national cardiovascular disease outcomes strategy, which currently does not address this area? What action will the Government take to rectify this?
On awareness among health professionals, the parents I have talked to say they are often taken aback by the fact that so many doctors have not heard of childhood stroke, let alone nurses and paramedics. A recent study by Bristol University of children in the UK with ischaemic stroke found significant delays in the time from symptom onset to diagnosis, finding that diagnosis took longer than 24 hours in 51% of cases. Better implementation of national and international guidelines around the diagnosis, treatment and long-term management of childhood stroke is crucial here. What action are the Government taking to address this? What support will they give to the Royal College of Physicians, the Royal College of Paediatrics and Child Health and stroke organisations to develop new guidelines to replace the RCP’s 2004 document, which is now 10 years old? Does the Minister agree that bringing together the latest research and the views of children, families and health professionals in this way to develop new guidelines would be a major step forward in helping to address the cases of late diagnosis and misdiagnosis?
It is all-important for teachers and other schools staff to be aware of stroke symptoms and the need for rapid response, especially for children with sickle cell anaemia. They need to be part of a multiagency team which is involved in the return to school reintegration plan, and in the development of special needs education statements to allow the child to participate in school as fully as possible. Regarding research, there is widespread recognition that the best medical and rehabilitative treatment options in childhood stroke are significantly under-researched. I know other noble Lords will be addressing this, particularly the noble Lord, Lord Patel, whose experience and insights on the key issues and what needs to be done will be invaluable.
Finally, I turn to rehabilitation. Many parents of children who have had a stroke say they have to fight for their child to receive the care and treatment they should be getting. This is particularly the case for the frequency and intensity of contact with therapists, and delays in access to physio and occupational therapy. Of course, there are hospitals which do brilliant work in this area, such as the multidisciplinary child stroke services at the Evelina London Children’s Hospital at Guy’s and St Thomas’ NHS Foundation Trust, and Great Ormond Street Hospital.
I recently sat in on a session at the Evelina with a three year-old girl who had suffered a stroke when she was nine months old, and her parents. The session was led by Dr Anne Gordon, the consultant paediatric occupational therapist, who is also here today. As a carer of a stroke survivor I do not need convincing about the importance and necessity of physio and occupational therapy, but watching specialist child stroke therapy in action underlines this.
The little girl had left-side paralysis and, although she could walk, she just was not aware of her left arm. Why should she be when she had never used it? So Dr Gordon was working and playing with her and the parents, encouraging her to move her shoulder and learn to see the arm as a tool that she might use to tuck things under or generally to assist her. It was a process of joint working with the child, the therapist and the parents, and fully involving the parents so that they could continue the physio exercises with her at home. Childhood stroke impacts the whole family including parents, siblings and grandparents. Health, social and education services need to work together to provide the multidisciplinary assessments and support that the child and their family need.
Finally, the Evelina has a dedicated childhood stroke co-ordinator, who provides direct support and information to children and their families while in hospital, during the transition from hospital to home and over the longer term, by helping the child receiving rehabilitation or with starting or returning to school. The co-ordinator works closely with health professionals and uses the parent carer networks to help them reach out and support each other. Sadly that is a one-off, made possible by three-year funding from a Stroke Association corporate sponsor. How does the Minister consider that such services can be sustained and made more widely available to childhood stroke survivors and their families?
There is so much to say, and I have run out of time, but I am confident that the noble Lords who are due to speak will flesh out and expand on the many issues I have raised. I thank them all for coming to speak in this important debate today.
Lord Lingfield (Con)
I thank greatly the noble Baroness, Lady Wheeler, for securing this valuable debate. I declare an interest in that I am the chairman of the charity Action for Rehabilitation from Neurological Injury. Last week, I was privileged to invite to your Lordships’ House a dozen distinguished professors and specialists in stroke rehabilitation from all areas of the United Kingdom. Their aim is to create a new UK stroke rehabilitation service which is specialised and effective enough to cope with the requirements of stroke survivors of all ages over the long term.
My guest at this panel was Andrew Marr, who, as your Lordships will know, suffered a debilitating stroke last year. I pay the greatest tribute to him for two things: first, his extraordinary and determined efforts, which are bearing fruit, to return himself to health and, secondly, his generous willingness to discuss his experiences in public. He shared with us some of the concerns that have reached him, since his own stroke, from other survivors and their carers. Many seemed to describe their treatment or that of their children by the multidisciplinary teams at the acute stroke phase as really excellent. However, their following therapy was time-limited and subsequent support for them or their children back in the community was very limited indeed. This was the third point made by the noble Baroness, Lady Wheeler: that they had to fight for it.
My connection to stroke and young people is personal. My son suffered a severe brain haemorrhage, causing a stroke, in 1997 when he was 21 years old. A few years after that, we started together the charity for stroke rehabilitation, which I have mentioned and which matches rehabilitation specialists and exercise professionals to stroke survivors after they have been discharged back to their communities. I have seen a number of the young people, from six year-olds upwards, who are brought by their parents to our centres or to visit our personal therapists. I have been hugely encouraged by the way that these young people can, with the proper treatment, do very well in conquering the effects of stroke. The ultimate aim for their rehabilitation is for children to start attending school or return to it, or other education, as normally as possible.
One of the limiting problems I see with the children who visit our centres—apart from speech and language difficulties, which often seem to be overcome more quickly—is weakness, particularly upper-limb spasticity. This seems to be the most devastating impediment, which needs consistent long-term affordable therapy because it has to be tackled head-on, often with the coerced use of the limb concerned. The evidence shows that whereas children have the advantage over adults of having a more flexible template for neuroplasticity to occur, with the younger brain adapting more easily to replace lost abilities, children can often simply decide not to use, for instance, an affected hand while playing. They do not understand why they must actively work hard on their limitations as adults, such as Andrew Marr, have done. I met a young boy recently, for instance, who had been allowed to put his stroke-disabled hand in his pocket and keep it there all day long.
That is why community charities are so crucial to continuing the work of the already stretched National Health Service, whose multidisciplinary teams have often completed their work as quickly as a few months from the initial stroke incident. Rehabilitation for children must be continuous, without let-up, to keep propped open the window of time that the brain is most plastic. A number of small charities across the country do this and there is an urgent priority for national support for their work. Many have proven records of successful rehabilitation which, of course, eventually saves the public purse huge sums in carer and ambulance call-out costs. Many are run by volunteers and operate on small private sponsorship. Yet it is to those very bodies that parents turn to request the provision of community therapy and training assistance for young stroke survivors.
We need the means effectively to help the young gain the post-stroke rehabilitation that they need to lead successful lives. A national rehabilitation service of the kind that my group hopes to see, co-ordinating the often disparate services that are currently available, would be an excellent way forward.
Baroness Wall of New Barnet (Lab)
My Lords, I, too, thank my noble friend for raising this serious issue. For many of us, hearing the numbers has come as a surprise. I acknowledge the support I have had from the Stroke Association in getting together some of the research. I had certainly not heard of young children having strokes before my noble friend Lady Wheeler brought this subject to our attention. Looking at the statistics, it is alarming that around 400 young children have a stroke every year. A significant proportion can easily die as a result, and those who survive the impact of a stroke can perhaps be immensely more disabled, physically and emotionally, than they would have been had they been seen sooner.
As with strokes affecting adults, a quick diagnosis and rapid treatment are essential to help save lives and reduce the longer-term impacts in children and younger people. However, research recently carried out into childhood strokes in the UK shows that significant delays exist in diagnosis, with more than half of cases taking longer than 24 hours to be confirmed. This is because, as I said earlier, it is not something that one automatically expects.
I am now chairman of Milton Keynes Hospital NHS Foundation Trust. I was chairman of Barnet and Chase Farm until a month ago. In preparation for speaking today and considering the seriousness of the subject, I was delighted that I had the opportunity to speak to Kate Swailes, who is matron of paediatrics. Although Milton Keynes does not have a children’s stroke unit, it has an incredible adult stroke unit. During our discussion I tried to understand exactly what she would see if a child came into A&E. She confirmed that it was very difficult to identify whether a young person had had a stroke. Her view was that if they knew the child had sickle cell disease, or had had a fall or an RTA, they certainly would scan them. However, she was concerned that because clinicians did not get a lot of exposure to this, they might not be up to speed with it.
Kate Swailes did a lot of homework over the weekend before speaking to me on Monday and rang me this morning to wish me luck with this debate. She told me that she and her fellow clinicians, working with the OTs, physios and speech and language therapists, have now designed a poster, like the Act FAST campaign, and have put “This could be a child” across the top. Nobody has done that before as far as they are aware, so I was thrilled to bits, as I am sure that everybody listening will be. They have done that at Milton Keynes and want to make sure that the Minister is aware of it. Perhaps it is one of the answers to the Stroke Association’s question about what other tools we can make available for the recognition of children’s stroke.
The noble Lord, Lord Lingfield, mentioned Andy Marr. The main shock of reading about this hit home when I listened to Jackie Ashley, his partner and a Guardian journalist, when she came to my trust just a fortnight ago to recognise one of the initiatives that one of our academic nurses has undertaken, to get all the occupational therapists, speech therapists and physios together. She has put an accredited module together. All the nurses working on stroke wards at Milton Keynes now have this additional training module which makes them even more conscious of what they are looking for when they see a stroke patient and what they can do to assist before and after the therapist has already attended.
We have already made gains in having this discussion, but I say to the Minister—and I am sure that he is receptive to this—that the recognition that this debate is giving to the issue must be raised much higher in the health service. Is it possible to do something inside the department?
Lord Rodgers of Quarry Bank (LD)
My Lords, this week, in advance of today’s debate, I looked at my copy of the second edition of the manual, first published in 2000, that is simply called Stroke. It was written by a team headed by Anthony Rudd, now the distinguished Professor Rudd of St Thomas’ Hospital. I could find no reference to children and young people in the index. I also looked at the NHS Stroke Handbook put together by the NHS North Central London Cardiovascular and Stroke Network and published a couple of years ago. Again, I could find no reference to children and young people.
There have been rapid advances, as the noble Baroness, Lady Wheeler, mentioned, in dealing with stroke over the last dozen years, and books and documents may have been revised to take account of stroke problems for children and young people. I see, for example, that there has been a Royal College of Physicians paper dated 2004. Either way, I am delighted that the noble Baroness, Lady Wheeler, introduced this debate and pleased that the Stroke Association is making a stand.
Every six weeks or thereabouts I walk across Hampstead Heath to the Royal Free Hospital in north London for a blood test to regulate my warfarin. Most of the patients are elderly, although a few are middle-aged. Others are physically disabled. However, I have not seen any children and young people. The problem is not visible to those many adults who have suffered a stroke and learnt to live with its consequences.
The Stroke Association says that the causes of stroke and the recommended treatment for children are different. In that case, how often is stroke diagnosed in children and how quickly can the necessary action be taken? Over the years, in debates in the House, I have asked whether GPs are trained and equipped to recognise the symptoms of stroke. I remain concerned that many GPs know little about stroke in the absence of direct experience of handling their own patients. On the assumption that the Minister will share our concern, can he tell us how the message can be passed on to GPs and reach those who have day-to-day contact with the public through their surgeries?
The noble Baroness, Lady Wheeler, expressly addressed the outcome of children and young people but the Stroke Association says that there needs to be research into the causes of childhood stroke. There is growing awareness of the characteristics and consequences of sickle cell disease and teachers should try to identify the potential signs of stroke. One of my daughters, a head teacher, tells me that among her 500 primary schoolchildren there is a girl who had a stroke at the age of two, resulting from moyamoya syndrome. She can understand but she cannot speak. Her teacher is almost one-to-one: she needs to communicate to the child in a very different way.
Seven years ago, my noble friend Lord Darzi set out a report called Health for London: A Framework For Action. It led to a major consultation and an agreement that certain hospitals should offer a top-quality service to stroke problems, recognising that all general hospitals could not offer the same level. I am not aware of how far this trend has successfully spread over and out of London and through the country. Given the need for services for children and young people, where are the services located—in general hospitals, existing stroke units or a high-quality specialist hospital?
There are many and rising demands on the National Health Service and costs have to be limited. The Stroke Association—a charity—has put £140,000 into research on childhood stroke at Bristol University. Does the NHS contribute to that Bristol fund? Can the Minister give an overall nationwide figure of money coming from public funds covering research on childhood stroke and where that research falls?
Lord Patel (CB)
My Lords, it is a pleasure to take part in this debate. I declare an interest: at one time I was a council member of the Stroke Association and I chaired Stroke Scotland for a while. After the noble Baroness, Lady Wheeler, sat down I decided that my speech was not much good, so I will take a different approach to today’s debate.
I want to look at what an ideal service for children with stroke might look like. The ideal service would be when both parents and GPs are aware that children might have a stroke, but especially when paramedics and medical staff in accident and emergency departments have the knowledge that stroke is one of the differential diagnoses to consider for children with particular symptoms. These children should have rapid access to MRI scanning; currently that is not happening. They should have access to specialist staff to inform early acute intervention, either on-site or known at tertiary level centres for district-level medical professionals to contact for advice; a multidisciplinary team experienced in early sub-acute neurorehabilitation to commence the child on a pathway of care, including parent support and guidance from day one after diagnosis; supported transition into a rehabilitation setting, with in-patient beds for children and young people available equitably nationally; tertiary level out-patient services to support and guide local teams in their management and support of children and families; and flexibility in service delivery to work around the family, for example being able to respond when a new issue arises in the longer term around school, socialising, mobility and so on. A family support worker with experience of stroke should be available to the families from diagnosis through to long-term recovery, to signpost families to services across the NHS, social, education and charitable sectors. I know that that is a long list; but that is what an ideal service would deliver for the best outcome for children.
We can begin by in the first instance—as the noble Baroness, Lady Wheeler, mentioned—getting the guidelines updated, this time from the Royal College of Paediatrics and Child Health, with the help of NICE, which would possibly set the standards, which would then improve the commissioning process. We will have to go further than that. One other way would be to carry out in the first instance a national audit of stroke in children, as that would inform us how the services perform.
I will briefly address research areas that might be useful to improve the services in future. Currently we do not know much about interventions at the early stage—even, for instance, when anti-coagulation or blood-clotting drugs should be used. Research might be in areas such as what therapeutic interventions work and the type of intervention and dosage of drugs that will be required, in particular in motor/movement interventions for preschoolers and infants, and social, emotional and behavioural input for adolescents.
Intervention effects could be evaluated at the level of neural pathways through innovations and MRI imaging. For instance, I know that two centres in the United States are currently carrying out research into MRI imaging through neural pathways—as well as clinical evaluation of functional change. Questions that could be answered, but realistically only through multicentre studies to support a large sample size, include, when is the optimal time after diagnosis to intervene? How old should a child be to gain maximum effect? How intensive a dose of intervention should there be? What models of remote access to intervention are effective, such as telehealth, for parents and for children and young people, to support parents in managing stress, build resilience in young people to manage daily life challenges, and enable people to meet each other and provide mutual support? Those are some of the key areas of research that are required and should be supported.
In conclusion, the current service is not ideal, but we can begin to make it ideal. We have, even in this city, the Evelina Children’s Hospital and Great Ormond Street, which will match up pretty closely to this ideal service. They could be used as good practice places which other units can learn from. I hope that we might hear some positive answers from the noble Earl; I have no questions for him.
Baroness Rendell of Babergh (Lab)
My Lords, I am grateful to the noble Baroness, Lady Wheeler, for initiating this debate on childhood stroke, a misfortune many will be surprised to learn children can suffer from. In fact, infants have the same risk of having a stroke as the old; an unborn child can have a stroke. One infant in every 4,000 live births has a stroke. It would be difficult to name an illness or disability more emotionally disturbing to a parent than a stroke occurring in a child. When it happens, a parent at first finds it hard to believe.
When I was young, both my parents died after having strokes, my father after several strokes. Between their deaths, someone I knew had a child of eight who suffered a stroke. Virtually nothing was done for my parents except to leave them to die in relative comfort. The little girl spent some time in hospital but was left partially paralysed, perhaps because it was a long time before what had happened to her was recognised and there was then no effective treatment. That was 40 years ago, and things have changed. Good care is now taken in hospitals and attention given to a parent’s psychological and emotional needs. There is recognition of the shock parents suffer when they learn of what has happened to their child.
The Evelina London Children’s Hospital, to which the noble Baroness, Lady Wheeler, and the noble Lord, Lord Patel, referred, is part of the Guy’s and St Thomas’ NHS Foundation Trust. It was founded in 1869 by Ferdinand de Rothschild, in memory of his English wife Evelina, who had died in childbirth. The hospital was restored and reopened in 2005 with 140 beds. At Evelina, the need of children to have their parents with them and the perhaps greater need of parents to be with their children is recognised, and there is no restriction on children and their parents being together. Parents can stay with their child at any time, and there is a pull-out bed next to the child’s bed.
Evelina collaborates with the Stroke Association in its Child Stroke Project. This provides tailored information for children, young people and families who are affected by stroke and offers emotional support in adjusting to the impact of stroke, while Scope runs a parenting befriending scheme called Face 2 Face. The Stroke Association has a helpline and provides support services across the country to help those affected by stroke to recover their lives.
Even more than the distress and anxiety caused to adults with stroke, childhood stroke brings fear and bewilderment to the parents of such children and it is they who need help and comfort. Apart from Scope’s Face 2 Face, the Stroke Association is now building a community of people who care about stroke and want to see people make the best recoveries. Emotional support is as crucial for recovery as physical rehabilitation, and stroke survivors’ emotional well-being should be a key part of their health and social care plans. Carers should be recognised as “partners in care” and included in the stroke survivor’s ongoing journey towards recovery. This must be especially true of stroke sufferers in childhood.
Investment needs to be increased in the provision of clinical psychologists, who should ideally be part of the multidisciplinary stroke team, both in hospital and in the community. Children and younger stroke survivors need ongoing support from diagnosis, through peer support groups and the transition to adult services, and this must include treatment of the emotional and psychological impact of stroke on children and their families. Specialist counselling is needed as children and their carers require individual attention specific to their needs.
The Stroke Association is asking health and social care providers to share their experience and successes. If such people are particularly proud of their service or the work they are doing to help people affected by stroke, they should get in touch with the Stroke Association’s campaigns website to share what they have discovered and achieved with others. Does the Minister agree that the passing on of such experience would be immensely beneficial to carers and parents of stroke-affected children, who can often feel isolated and forgotten?
Lord Smith of Clifton (LD)
My Lords, I thank the noble Baroness, Lady Wheeler, for introducing this short debate on stroke and young people. I shall concentrate on the young victims of sickle cell disease. It is, as other noble Lords have said, one of the major causes of stroke in young people.
Until I stood down last week, I was for some years vice-chair of the APPG on Sickle Cell and Thalassaemia. When my noble friend Lady Benjamin introduced me to His Excellency the Trinidadian High Commissioner and mentioned my involvement with the APPG, he looked somewhat quizzical. I explained that as I was susceptible to many modern diseases and had succumbed to many, both actually and hypochondriacally, the one I was unlikely to suffer from was sickle cell disease and therefore it was the disease I could speak about most objectively.
When the previous Labour Government announced the creation of a lead agent for adult stroke, I asked why they had not appointed one for children. Since sickle cell is the main cause of stroke in young people, was it because the Department of Health was unconsciously institutionally racist? Consequently, the Royal College of Physicians was swiftly announced as the lead agent for stroke in young people. Is this still the position? If so, what initiatives has the royal college taken since 2010 in relation to research into or treatment of the disease? Does the RCP make regular recommendations to the department and, if so, how many times has it done this since 2010? More generally, what initiatives has the Department of Health been involved with or know about?
This is a time of rapid advancement in both cell and gene therapy. It would seem opportune, therefore, to examine what likely improvements in the treatment of and research into sickle cell disease might be attempted, especially with regard to stroke in young people. I believe that there is a crying need, as other noble Lords have said, to develop a single centre of academic excellence to further both research and treatment. Accordingly, nearly two years ago, I enquired of all the London deans of medical colleges whether they would bid to host a dedicated chair in sickle cell disease in their institutions. They replied that they would all do so. Having got their assent, I next saw the Chief Medical Officer at the Department of Health and put the proposal for a dedicated professor and supporting staff to Dame Sally Davies, who, in her previous role as a consultant, had much experience of treating sickle cell patients. Her response was not encouraging. First, she could see no need for any special funding for research in the area. Secondly, no extra money would be made available. Thirdly, in her opinion there was too weak a gene pool of worthy professorial candidates in the UK who could fill such a chair.
That third reason is a damning indictment of successive Governments and agencies such as the MRC and other research foundations. Why has there been such a lack of concern and finance? In any case, why should the search for suitable candidates be confined to the UK? British universities attract many professors across disciplines from abroad, and I am sure that a visa would be awarded to a foreign expert to come and lead research into sickle cell if he or she could be found. At a meeting in November 2012, with Anna Soubry MP as the Minister responsible to Parliament for sickle cell disease, APPG officers put the idea of a chair to her and she responded enthusiastically. Unfortunately, her follow-up letter was written by the civil servants and did not reflect this but struck a depressing note as the official departmental line.
As an index of the trends at work, it is interesting to look at the role of the MRC and its increase in spending. What MRC funds were made available in 2012-13 for sickle cell disease? There has been a modest incremental increase, which is welcome, but the trend is still increasing. To what extent is the MRC adopting a strategic approach to sickle cell? Is it encouraging a centre of excellence or does it just respond to disparate bids? One way in which more money could be found perhaps is by greater co-operation within the Commonwealth. The MRC already gives money to the University of the West Indies centre for the treatment of sickle cell, which is commendable, but funds for pioneering research into the causes of the disease are lacking. Since the incidence of this disease is high in Africa and the Caribbean, as well as in the UK—and, for that matter, the USA—I urge Her Majesty’s Government to seek collaborative funding within the Commonwealth to secure adequate financing or research. Does the Minister agree?
Lord Imbert (CB)
My Lords, I was so glad when I saw that the noble Baroness, Lady Wheeler, had secured this debate. Since becoming the victim of a rather nasty disabling stroke some years ago, just a few months after being introduced in your Lordships’ House, I have, for very apparent reasons, taken a close interest in this country’s progress on prevention, diagnosis and treatment of stroke. The Government, the National Health Service and charitable groups such as the Stroke Association deserve congratulations on the improvements that we have seen in recent times in adult stroke diagnosis. I also acknowledge the improvement in later treatment, especially the use of the clot-busting thrombolysis drugs and rehabilitative support for adult victims but, wretchedly, this has not been matched in the area of childhood stroke. Too many parents of stroke-damaged children report that they have a constant fight so that their child can receive the essential care and treatment that they need.
Many people believe that strokes happen only to old people; tragically this is not so. Dr Anne Gordon of the Evelina London Children’s Hospital recently told a meeting of the All-Party Parliamentary Group on Stroke that as many as 1,500 children a year could be affected by stroke in the UK. Inevitably and tragically, a number of those die very soon after or during their stroke—and this brain attack, as it is sometimes called, is one of the top 10 causes of death in children. Of those who survive, can one imagine the enormous difficulties they have to overcome if they are to have a reasonable and fulfilling life to which all children should be entitled? But life is not fair and far too many of these young victims are not receiving the help and attention that they need.
I recall the feeling of dejection when I was first told, and understood, what had happened to me after my brain attack. Would I ever walk again? Would I get rid of that great wodge of cotton wool and glue which seemed to block my mouth and prevent me talking? Yet I was, and am, one of the more fortunate ones. I was in my mid-60s when I experienced this life-changing incident so, unlike young people in their early or formative years, I had already enjoyed a full, active and rewarding life.
Some days after that incident-filled and painful day, I stopped my selfish and self-centred thoughts about my own plight and the challenge which I now faced because I witnessed and was told of the difficulties and challenging times ahead for children. There were even some toddlers and babies who had suffered a stroke. How did they learn to speak and think in their native language when they had never known or experienced the joy of speech? If they are just toddlers, how do they learn to walk with one leg failing to play its part and simply getting in the way? Much more needs to be done to assist young people and children to cope with their dysfunctional limbs, brain and tongue, so what can be done to help these young people?
First, the improvements that we have seen in recent times in adult stroke care and support must be matched in the area of childhood stroke. There needs to be more work done to raise public and professional awareness of the risk factors, signs, progress and outcome of childhood stroke. The noble Lord, Lord Rodgers of Quarry Bank, mentioned the lack of understanding and knowledge among GPs. That applies in hospitals, certainly in accident and emergency departments. When I was taken in there, the colleague who was with me told the doctor what he thought had happened to me. I was conscious enough to understand that two doctors were standing by my bed saying, “What shall we do with him? Let’s put him in Elizabeth ward, as there is a spare bed there”. But did they attend the stroke or do something about it? No, of course not, so professionals must know more about the diagnosis and understanding of stroke—and I mean doctors and nurses.
There must be a particular and strong focus on improving specialist rehabilitation and long-term services and support for childhood stroke survivors and their families. Childhood stroke, as with that of adults, has an impact on the whole family but that impact and shock, it must be acknowledged, is greater when it is children who have suffered a fatal or permanently disabling stroke. Re-integrating a severely disabled child into the family not only affects the parents but has an adverse effect on the emotional and physical health of siblings, and even grandparents.
There is an urgent need to provide research into a more detailed understanding of childhood stroke and I hope that the Minister will assure us that financial provision will be made to tackle this problem. This should be government or public money and not left to charitable organisations such as the Stroke Association, which provided funding of more than £140,000 to a team at the University of Bristol for the biggest ever UK study into childhood stroke. It is simply disgraceful that the Government were able to find £100 million two years ago to introduce the farcical police and crime commissioner scheme, which the public said that they did not want. It will cost another £100 million to keep this highly discredited and increasingly laughable system going for the next 18 months. I plead with the Government to find an equivalent sum to save children’s lives and survive the devastation of a stroke. I look forward to the noble Earl’s answer.
The Parliamentary Under-Secretary of State, Department of Health (Earl Howe) (Con)
My Lords, I express gratitude to the noble Baroness, Lady Wheeler, for raising this very important issue, and to all noble Lords who spoke for their valuable and excellent contributions. It will be difficult if not impossible to do justice to the points and questions in the time available, but I undertake to write on those that I am unable to cover today.
Strokes in children are thankfully uncommon, but the effects of a stroke can be devastating both for those who have one and for their families and loved ones. This is particularly the case with children, where a stroke may have a lasting impact on their development and educational attainment, with grave implications for their future.
It is important therefore that there is awareness of childhood stroke. Public Health England is responsible for awareness campaigns and has run the Act FAST campaign to raise awareness of stroke for the last six years. It is its most successful campaign. The Act FAST campaign depicts older adults, and, while there is no specific focus on children, the message remains the same. However, as many noble Lords will know, the signs of a stroke in infants and young children may be less obvious, and Public Health England will want to consider whether a specific campaign aimed at raising awareness of strokes in children is needed.
The provision of stroke care by the NHS necessarily embraces a wide range of different services. There are different causes of stroke in children—including disorders of the heart, blood and vascular system, as well as infections—and the effect of strokes will also be different. As noble Lords will know, there is a heightened risk of childhood strokes from certain variants of sickle cell anaemia, for which all newborn babies in England are screened with a heel-prick test. I will write to my noble friend Lord Smith in answer to his questions on this subject.
The risks of stroke for children with these variants of sickle cell disease can be assessed using a test known as a transcranial Doppler scan, and those deemed at high risk can be treated with blood transfusions. An annual scan is recommended for children with these variants of sickle cell disease, and NICE guidelines and a national screening programme for sickle cell are already in place.
Not all strokes can be prevented, though, and where a child does suffer a stroke it is important that they get the right treatment. Where a stroke leaves a child with complex or specialist needs, their treatment will normally be delivered through specialised paediatric neurology services commissioned by NHS England. Noble Lords will be pleased to hear that NHS England is running a number of pathfinder projects looking at the care processes for paediatric neurosciences through its Paediatric Neuroscience Clinical Reference Group. This work seeks to define the best arrangements for paediatric neurology patients and encompasses children’s strokes. In addition, the Royal College of Physicians is currently updating its 2004 guidelines on childhood stroke and I would expect these standards to be considered by the Paediatric Neuroscience Clinical Reference Group in due course.
I understand the call to integrate childhood stroke into the cardiovascular diseases outcomes strategies. NHS England is currently leading a group to implement the 10 key actions to improve outcomes for cardiovascular disease. It would be for NHS England, working with key stakeholders, to consider whether childhood stroke should be included in this work, and I will ensure that it is made aware of noble Lords’ views on this issue. I am sure that NHS England will look to encourage an integrated and life-course approach to stroke care, ensuring that paediatric care is appropriately aligned with adult strategies.
Mainstream services, including ongoing care, for supporting children who have had a stroke—and their families—are commissioned by clinical commissioning groups. It is worth recognising that clinical commissioning provides an effective basis for ensuring that children who have suffered a stroke are effectively supported: CCGs are under a duty to obtain appropriate advice from persons who, taken together, have a broad range of professional expertise in the prevention, diagnosis or treatment of illness. This is essential for such a complex area of clinical practice which must be informed by emerging evidence.
The noble Baroness, Lady Wheeler, and the noble Lords, Lord Patel and Lord Imbert, referred to the need for research. As far as evidence is concerned, the National Institute for Health Research currently funds two studies on childhood stroke through its biomedical research centres at Imperial College and Great Ormond Street Hospital, including one looking at the outcomes of childhood stroke. The NIHR welcomes funding applications for research into any aspect of human health, including the needs of children and young people who have had a stroke.
A number of noble Lords, including the noble Baroness, Lady Wheeler, mentioned the need for good rehabilitation services for children. We are aware that there is a significant issue around capacity in paediatric neurological rehabilitation in England. I understand that NHS England is currently undertaking work to assess future capacity needed. Any expansion of capacity would, of course, have cost implications. In addition, in April 2014, NHS England established the specialised commissioning task force to make immediate improvements to the way in which NHS England commissioned specialised services, and put commissioning arrangements on a stronger footing for the longer term.
I mentioned the pathfinder projects looking at end-to-end care processes for paediatric neurosciences. In addition, I am advised that NHS England has indicated that it will ensure that due consideration is given to the Royal College of Physicians guidelines for treating children who have suffered strokes.
My noble friend Lord Rodgers made the telling point that GPs should be required to do training in child health. As part of the mandate to Health Education England, it committed to ensuring that GP training produces practitioners with the required competences to practise in the new NHS. To support this, Health Education England has been asked to work with the devolved Administrations and the Department of Health on responding to the recommendations of the Shape of Training report on postgraduate specialty training, and the provisional findings of NHS England’s review of primary care services. The case for a fourth year and enhancements to GP training will be explored further as part of this response, including specific training in that extra year in child health and paediatrics.
The noble Baroness, Lady Wall, and my noble friend Lord Rodgers raised concerns about the time until diagnosis. We are committed to working to improve the health outcomes delivered by the NHS for children. That is why we set up the Children and Young People’s Health Outcomes Forum in 2010. Its report set out a number of recommendations. One which we are working on is to develop a new indicator which would report the time from the first presentation to the NHS to definitive diagnosis and start of treatment.
As part of our response, we made a pledge alongside key partners, including NHS England, NICE, Health Education England and the Society of Local Authority Chief Executives, to work together to improve health outcomes for children. Our shared ambitions are for children, young people and their families to be at the heart of decision-making. Together, the organisations who signed the pledge are making progress towards meeting those ambitions. However, there is much work to be done and the Children and Young People’s Health Outcomes Forum will continue to actively monitor progress on the action taken as a result of the recommendations made in its initial report published in July 2012. This work will help to improve the outcomes and experience of children who suffer strokes and their families.
In reply to the noble Lord, Lord Patel, I say that the new integrated arrangements for children and young people with special educational needs, which the Children and Families Act introduces from September, are the ideal basis for ensuring that special educational services and social care can be planned in a joined-up way with the healthcare that a child needs arising from a complex condition. Children with SEN will have an education, health and care plan, which different sectors will come together to assess and plan for, focusing on the outcomes which make the biggest difference to the child. We are committed to ensuring that staff who work with children have the right skills and experience. That is reflected in our mandate to Health Education England.
There are therefore a number of opportunities on the horizon which could contribute significantly to improved outcomes for childhood stroke, and I again thank all noble Lords who have spoken in this excellent debate.