(10 years, 1 month ago)
Grand Committee
To ask Her Majesty’s Government what action they are taking to support children and young people who have had a stroke.
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.
(10 years, 1 month ago)
Lords Chamber
To ask Her Majesty’s Government what action they are taking to ensure that the National Health Service has sufficient district nurses.
My Lords, the Department of Health is working with Health Education England, NHS England and the Queen’s Nursing Institute to raise the profile of district and community nursing and to attract more nurses to choose this as a career path. That work includes a workforce project led by the Community Nursing Strategy Programme to ensure an adequate supply of highly skilled district nurses to support patients in community settings, provide quality care and improve patient outcomes.
I thank the Minister for his response. Does he not agree that the failure to address the chronic shortage of district nurses makes the RCN’s call to action even more urgent? The college has found that district nurses are so stretched that they can spend only 37% of their time actually dealing with patients in the community, which is deeply worrying. How does this help people with long-term conditions who depend on specialist nursing care to stay out of hospital? When is a comprehensive strategy that addresses the urgent action which needs to be taken on this matter going to be published?
My Lords, we recognise the need for urgent action, and that it is required across the piece. We need to train more district nurses, and therefore training places have gone up both last year and this year. We also need to equip district nurses with technology. To that end, the nursing technology fund will address the issue that the noble Baroness referred to initially, which is the time that nurses have to spend with their patients. Technology can make time management much more efficient, and it is also good for the patient, who feels more in touch. NHS England and Health Education England have set up a workforce project which, as I said in my initial Answer, is designed to address not only workforce numbers but also the attractiveness of district nursing to trainees.
(10 years, 1 month ago)
Lords ChamberMy noble friend will know that NICE looks at the clinical effectiveness of a drug alongside its cost effectiveness. The cost-effectiveness equation will naturally include consideration of unpleasant side-effects. The advice that it issues will reflect the evidence that it has from clinicians on that matter. It will then be for clinicians to decide whether the risk-benefit ratio is appropriate for particular patients.
My Lords, when considering the Care Act we were very concerned to ensure that care and support plans for social care users included contingency planning for people who have fluctuating conditions such as MS and rheumatoid arthritis, where support needs can vary from week to week and day to day. What mechanisms are being put in place to ensure the provision of the flexible and comprehensive care plans that are needed?
(10 years, 2 months ago)
Lords ChamberI am grateful to my noble friend. Expenditure on musculoskeletal disease research by the National Institute for Health Research has increased from £15.5 million in 2009-10 to £23.1 million in 2012-13. The NIHR is investing over £21 million over five years in three biomedical research units in musculoskeletal disease. They are all carrying out vital research on rheumatoid arthritis. The NIHR is currently investing £2 million in a programme of research on treatment intensities and targets in rheumatoid arthritis therapy.
My Lords, can the Minister tell the House what impact the very worrying reported shortage in take-up of family doctor training places is likely to have on the ability of GPs to support patients with potential rheumatoid arthritis symptoms? A recent survey by Pulse found that only 7% of the funding for medical schools goes into teaching general practice. Does this not augur badly for the future of primary care?
My Lords, we of course recognise the very hard work that GPs do. Despite a decrease in headcount, there has in fact been a 1.2% increase in full-time GPs since 2012 and the number of practice nurses and practice staff has also grown. However, we also recognise that the workforce needs to grow to meet rising demand. That is why our mandate to Health Education England requires it to ensure that 50% of trainee doctors enter GP training programmes by 2016. Generally, we will work with NHS England to consider how to improve recruitment, retention and return to practice in primary and community care.
(10 years, 2 months ago)
Lords Chamber
To ask Her Majesty’s Government how they will ensure Clinical Commissioning Groups’ strategies and implementation plans support carers and take account of their needs and aspirations.
My Lords, NHS England assures clinical commissioning groups’ plans to support and challenge them to meet the needs of their populations. This includes considering supporting carers, who are a hugely valuable asset for local communities. NHS England has published a commitment to a carers action plan. It will review the delivery of these commitments through feedback from carers and carers’ organisations and through progress towards the relevant outcomes indicators and mandate objectives.
I thank the Minister for his response. At the start of national Carers Week, it is right for the whole House to pay tribute to our 1.5 million carers and the vital support that they provide in caring for their partners, friends or a family member. What is the Minister’s response to a recent Carers UK survey, which found that while GPs have implemented systems to identify those undertaking carers’ responsibilities, few are actually doing anything differently to accommodate them—for example, giving regular health checks or changing appointment systems to support getting somebody to the surgery who is in a wheelchair or caring for somebody with dementia? Does the Minister agree that the appointment of carers leads under CCG implementation plans is a key step in bringing about the major push that is needed to get GPs to up their game? How will the Government ensure that that happens?
My Lords, I fully endorse the comments of the noble Baroness about the importance of carers. They play a crucial role as partners in care for the well-being of those they look after. I saw that report and of course it is important that GPs are aware of their role in supporting carers. We set out our vision for this in a document we published, Transforming Primary Care. That recognises the importance of involving and supporting carers. It sets out an expectation for GPs to identify carers as a matter of course. As I said in my original Answer, CCG plans will be assured by NHS England, including the important element of carers’ support and recognition.
(10 years, 3 months ago)
Lords Chamber
To ask Her Majesty’s Government what response they intend to make to the findings of the Age UK report Care in Crisis on the impact of cuts to care for older people.
My Lords, social care is a priority for this Government, which is why we have allocated an extra £1.1 billion to councils this year to protect services. We are building on this by creating a £3.8 billion fund next year to join up NHS and social care services. Both health and social care need to work differently to respond to the needs of our ageing population, focusing on keeping people well and living independently for as long as possible.
I thank the Minister for his response. Age UK’s report found that social care cuts between 2010 and 2013 have resulted in 168,000 older people no longer receiving help with essential tasks such as eating, washing and getting dressed. The Nuffield Trust recently put the figure over four years at 250,000 people who have lost state funding support. In the light of today’s developments, can the Minister please comment on what is now happening to the Better Care Fund and when does he expect to update the House fully on why the launch of the fund has been delayed? The Minister knows that the fund basically uses resources already committed to shoring up the existing reduced level of services and that there is no new money in it. We now learn that the Cabinet Office says that the fund lacks financial credibility, in particular as to how on earth local hospitals are to save money to move care into the community in the current climate of substantial cuts. How does the Minister think progress can be made on the transfer to community care amidst the chaos and confusion into which this policy has now fallen?
My Lords, I can assure the noble Baroness that there is no chaos and confusion. As regards reduced numbers, which was where the noble Baroness started, the transformation in the service model that we are promoting focuses above all on prevention and is designed to enable people to live independently for longer, as I said earlier, so as to reduce the number of people who are dependent on formal care. Councils have told us that lower social care user numbers are partly due to the success of their core prevention work, but also due to increased use of re-ablement services for people who leave hospital to help them get back on their feet. As regards the Better Care Fund, there has been no delay there. We wanted to set aside enough time to make sure that all areas of the country have developed comprehensive plans for joined-up care. The better care plans start from April next year, as the noble Baroness is aware, and we have asked for early versions to be completed a year in advance so that we can review them, check their level of ambition and test how they will be delivered. That is what is happening now and we are broadly on track with the programme.
(10 years, 3 months ago)
Lords ChamberMy Lords, I thank the Minister for his full and thorough explanation of the Government’s changes to the Bill since it left this House. We will deal with each issue as it comes up. I will deal with Amendments 1 to 10, 44 and 46 to 51 on the Better Care Fund, and Amendments 12 to 39 on the care and support appeals process.
In light of today’s revelations about the Government’s problems with the aims and operations of the Better Care Fund, perhaps I might ask a couple more questions that follow on from the earlier exchange with the Minister on this matter. The Government’s technical amendments—Amendments 1 to 10, 44 and 46 to 51 —on the fund and achieving integration of care and support between the NHS and local authorities are straightforward. Of course, whether the fund can ever achieve what it set out to achieve looks like a very different matter.
The Cabinet Office review has found that the £3.8 billion fund lacks financial credibility. The Nuffield Trust says that it is based on “flawed logic”. The King’s Fund says that the aim stressed by the Minister earlier to get spending plans in place for the fund in time for the 2015-16 Budget is “completely unrealistic”. Its chief executive, Chris Ham, points out in today’s Guardian what many of us have been stressing all along, despite supporting the principle of and need for the fund; namely, that hospital budgets can be reduced only if much more care is already being provided in the community by GPs, community nurses and staff who are supporting patients in their homes. He says that just cutting NHS hospital budgets now would place,
“additional stress on an NHS already struggling to balance the books and maintain acceptable standards of patient care”.
Surely that is the point. Taken with the huge underfunding of local authority social care highlighted by the Age UK report Care in Crisis that was referred to earlier, this is the underlying problem that has still to be addressed. The fund does nothing to address the huge social care funding gap that has led to the cuts in social care support that Age UK’s report has highlighted, particularly the ending of help with essential tasks for older people, such as eating, washing and getting dressed. Those are the very services that help them remain independent and living in their own homes with a good quality of life.
The Minister says the fund has not been suspended, but there are clearly problems. Can the Minister give us any further details about the Cabinet Office review findings, and in particular the concern about the lack of detail about how the savings will be achieved? What is the timescale for the further review referred to by several newspapers and the specialist press today? Can the Minister explain how progress is to be made in enabling older people to remain active and independent at home or in the community when there is just not the funding or support available to help them?
Finally, on the technical amendments to the care and support appeals process, we welcome the Government’s announcement accepting the two recommendations from the Delegated Powers Committee and fully support these government amendments.
My Lords, I have just one issue to raise, on Amendment 32 and the Government’s amendments in light of the Delegated Powers Committee report. I speak on behalf of a number of people who are grateful that the Government have been able to respond very quickly to this. It is much more sensible for this to be an affirmative instrument rather than a negative one.
My Lords, on behalf of learning disabled people and other vulnerable people I should like to thank the Government for making this amendment, which certainly ensures that their care will be greatly attended to in the future.
My Lords, briefly, I also support the Government’s amendment on this long-running but vital issue. As the House knows, we strongly supported the need for the amendment. We, too, warmly congratulate the noble Lord, Lord Low, on his dogged determination and efforts to achieve this outcome. We also thank noble Lords from across the House who have helped to bring this about. On these Benches, we recognise that this was very much unfinished business from the Labour Government. We congratulate the Minister on the hard work he has put into finding a way forward and to getting cross-government departmental agreement, which has been important. We recognise that the amendment is a very significant step. I was going to ask for clarification on a couple of issues, but they have been raised in the debate so I shall leave it there.
(10 years, 3 months ago)
Lords ChamberMy Lords, I, too, pay tribute to Elena Baltacha, who was a truly remarkable and very brave woman. One in five people in the UK is at serious risk of liver damage, but a recent government response shows that the Secretary of State has not met any external organisations to discuss liver disease since May 2010, and current Ministers have not met representatives of people living with liver disease since September 2012. Can the Minister commit urgently to remedying this situation, particularly as it is in such stark contrast to the 130-plus meetings the Government have had with the drinks industry?
My Lords, liver disease is very much in the sights of my honourable friend the Minister for Public Health, as is evidenced by the document we published last week, Living Well for Longer, in which there is a whole section on alcohol and liver disease, and by what NHS England and Public Health England are doing to tackle them.
(10 years, 4 months ago)
Lords ChamberMy Lords, a recent survey found that more than half of young carers reported having a mental health problem, including feelings of stress, anxiety and depression, eating and sleeping problems and risk of self-harm. What are the Government doing to support these dedicated young people? What guidance will be given in the Children and Families Act and the Care Bill on how local authorities should work with mental health services to ensure that young carers get the support they so clearly need and deserve?
The noble Baroness is absolutely right and the pressures and strains on young carers have been well recorded. It is fair to say that compared with a few years ago, not least thanks to the efforts of the previous Government but also the work that we have continued, GPs and others working with families are much more alert now to the needs of young carers and can signpost them to appropriate support. The CYP IAPT programme is designed no less for young carers than it is for others.
(10 years, 4 months ago)
Lords ChamberI thank the Minister for repeating the Statement. I also take this opportunity to place on record the Opposition’s thanks to Sir Cyril Chantler and our congratulations on his excellent review of the public health evidence. We welcome much of what the Minister said, but I am sure that we share with other noble Lords who have long campaigned on this issue our frustration at the prospect of yet another consultation—albeit on regulations—especially when Sir Cyril's review is so clear and unequivocal about the impact that standardised packaging would have.
We know that the case for the introduction of standardised packaging is, as ever, urgent. The cost to the NHS of treating diseases caused by smoking is approximately £2.7 billion a year. Two-thirds of adult smokers took up smoking as children. One in two long-term smokers dies prematurely as a result of smoking-related diseases, and more than 200,000 children take up smoking every year in the UK. As Sir Cyril says, if we can reduce that figure by even 2%, that is 4,000 fewer children taking up smoking every year. For that reason, we strongly welcome the confirmation in Sir Cyril’s review of what public health experts have been arguing for some time—namely, that standardised packaging makes cigarettes less attractive to young people and could help save lives.
Sir Cyril's remit was to consider whether standardised packaging would lead to a decrease in tobacco consumption. Does the Minister not accept his clear conclusion that,
“standardised packaging would serve to reduce the rate of children taking up smoking”,
and that it could lead to,
“an important reduction … on the uptake and prevalence of smoking and … have a positive impact on public health”?
Of course, this is something that all the previous evidence reviews showed. Indeed, Sir Cyril states:
“My overall findings are not dissimilar to those of previous reviews”.
Did not the Government’s own systematic review in 2012, which Sir Cyril describes as “extensive and authoritative”, conclude that standardised packaging is less appealing than branded packaging, that it makes the health warnings more prominent and that it refutes the utter falsehood that some brands are healthier than others?
All the royal colleges and health experts, including the Royal College of Paediatrics and Child Health, the BMA and the campaigning health charities are united on this. The majority of responses to the Government’s own consultation also favoured it. Does the Minister therefore finally accept that there is an overwhelming body of evidence in favour of standardised packaging and that there can be no excuse for further delay?
The House will know that Labour has long called for the immediate introduction of standardised packaging. However, for every step we took in government on smoking and tobacco, the tobacco industry fought us all the way and then took a new approach. As my noble friend Lady Thornton put it when we recently pressed for amendments introducing standardised packaging to be included in the Children and Families Bill,
“we are talking about whether we are prepared to allow the over-powerful and wealthy tobacco companies to gain their next market for the profits they need to make from tobacco products … They can exist only if they continue to recruit young people to tobacco addiction so that they have their next generation of smokers”.—[Official Report, 20/11/13; col. GC 404-05.]
Do the Government not accept that the failure to take action on this issue under the Children and Families Bill was yet another missed opportunity? After Labour banned tobacco advertising, manufacturers developed increasingly sophisticated marketing devices for their packaging. We know that they spend millions every year on design testing to lure in new, young smokers. The question is: why have we had to wait so long for action on standardised packaging? Does the Minister accept the impact that further delay will have? More than 70,000 children will have taken up smoking since the Minister announced the review, and today he announced yet another consultation. The Government have already had a consultation, which reported less than a year ago. What do they expect to change?
At the time of announcing Sir Cyril’s review last November, the Government promised to issue regulations if they could be persuaded by the case made by Sir Cyril. Now they say that they are persuaded that he has made a “compelling case”—so why the further consultation and inevitable delay? Is this another attempt to kick the matter into the long grass, and can we be reassured that there will not be another government U-turn on this issue? How many more children will take up smoking before the Government make a decision and act? Does the Minister not accept that it is the clear will of both Houses of this Parliament to proceed with standardised packaging without further delay?