Health: Stroke

Baroness Wheeler Excerpts

Wednesday 23rd July 2014 Grand Committee

Asked by

[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.