(11 years, 1 month ago)
Grand Committee
To ask Her Majesty’s Government what plans they have to improve the diagnosis and treatment of neurofibromatosis type 1.
My Lords, I am delighted to open this debate on the provision of services for people with NF1. I am very grateful to my noble friend Lord Bassam for alerting me to the issue and, indeed, for speaking in our debate today.
Essentially, I am concerned at the lack of a cohesive strategy within the NHS for dealing with this condition, particularly with problems of early diagnosis and lack of support for sufferers and their families. NF1 and NF2 are a group of genetic conditions that predispose people to the development of tumours of the nervous system. NF1 is one of the commonest genetic disorders. NF2 is much less common, with only around 800 people affected in England at any one time. The care of all NF2 patients is nationally commissioned through four specialist centres. However, NF1, although more common, is far from being a household name.
The diseases involve the skin and nervous system predominantly. People with NF1 have an increased risk of developing a specific NF-related cancer. The rare physical complications can affect most of the body’s systems. This can evidence itself in physical difficulties and deformities. At least 80% of people with NF1 also have learning, educational, psychological, communication and behavioural difficulties. A recent UK study published in the Journal of Pediatrics showed a high prevalence, 25%, of autism spectrum disorder in NF1 patients and confirmed the findings of previous studies that 50% of NF1 children have attention deficit hyperactivity disorder, yet only 3% of the children in the study had actually been diagnosed with either condition. According to the Department of Health, it is estimated that there are more than 11,000 individuals with NF1 in England. However, research published in 2010 by the excellent Manchester Centre for Genomic Medicine suggests that there could be more than 18,000 people with NF1 in England.
One of the problems is that the care of NF1 patients does not fall within the remit of one particular medical specialty, and therefore care is frequently disparate and fragmented. NF1 has little profile compared to other conditions, and this is as true of clinicians as of the general public. In a recent Written Answer, the noble Earl said that there were currently no plans for raising awareness activity in relation to NF1. Instead, he referred to the NHS Choices website for information. This is not sufficient. Fifty per cent of people with NF1 are the first in their families to have the condition due to a new genetic mutation. In these cases, early diagnosis is a particular problem. Indeed, an opportunity for early diagnosis is often missed by health professionals as they may lack an understanding of the condition. Many parents face a wall of ignorance from their GPs and have to fight for appropriate referrals and sometimes go privately. We know of cases where parents have been threatened with having their children taken into care because a health professional has taken marks on the skin or fractures through abnormal leg bones as evidence of child abuse. Some patients have rare complications that can cause significant morbidity and are frequently life threatening. They need access and long-term monitoring by specialist teams to allow widespread access to specialist care.
Since 1990, excellent clinical services have been developed by the neurology department at Guy’s and St Thomas’, and the Manchester centre that I have already mentioned. At any one time, these two centres have approximately 500 patients with complex NF1 under their care. However, the majority of people with NF1 are reliant on services up and down the country, which are often fragmented, and many areas lack specialist clinics. Although both specialist centres work closely with the national charity, the Neuro Foundation, much more needs to be done to get an integrated approach across the NHS. One huge asset is the small but invaluable network of specialist advisers variously funded by the NHS and the Neuro Foundation. The value of the network is demonstrated every day. The unique and specialised work of the advisers with individuals, families, health professionals, schools and other voluntary organisations is highly valued. Working from a base within an NHS trust, and with strong links to the regional genetics centres, they link with the many other professionals involved in the care of anyone with NF1. There are only six advisers in England, three of whom are part-time. They are very hard pressed and cannot cover the whole country.
One solution to the problem of misdiagnosis would be to use the personal child health record—the red book—which is a national standard health and development record given to parents at a child’s birth. The parents retain the red book, and health professionals should update the record each time the child is seen in a healthcare setting. It comes under the auspices of the RCPH. I very much hope that it will consider adding checks relating to birth marks to the content of the record. Will the Minister lend his support to that?
I mentioned earlier the lack of educational attainment by young people with NF1. The commonest undiagnosed problems found in children seen in the two specialist clinics are undiagnosed learning and behaviour problems. I have heard of cases where statementing took place only towards the end of a student’s career in school. We must put this right. It is also vital that the DWP looks closely at the support available for people with NF1 in their efforts to enter the world of work. The recent changes in unemployment benefits have caused many people with NF1 considerable distress. I am also aware of people being unsuccessful because their facial appearance is different.
I am also alarmed at the lack of opportunities for young people with NF1 to get together and socialise. They are often left isolated. When they get together, they realise that they are not on their own and other young people suffer from the same issue. The same often goes for their parents. For the past two years, through hard work in fundraising by two mothers, a small number of children have attended a week-long NF1 camp. In Scotland, the charity Funny Lumps now runs regular get-togethers for NF1 children and their families. However, all children with NF1 should have these opportunities.
In the UK, we have two fantastic specialist centres—Manchester, and Guy’s and St Thomas’—which have made major contributions in NF2, learning and behaviour in NF1 and early diagnosis of sarcoma in NF1. Yet more is needed to fund UK treatment trials and to look at cost-effective models of care and social support for people with NF1.
In conclusion, will the noble Earl consider how the Government could recognise that more needs to be done to help people with NF1? Is he prepared to meet the Neuro Foundation to discuss these matters further? Will he support the red book embracing NF1? Will he support efforts to employ more specialist advisers? I have been advised that ideally we need 20 throughout the UK. Clearly, we need a partnership between the Department of Health, NHS England, specialist centres and the Neuro Foundation. Can he assure me that funding for the specialist centres for complex NF1 and NF2 conditions will be maintained? Will the Government encourage efforts to enable young people with NF1 to come together for socialising and activities? Will he talk to colleagues in the Department for Education to get early access to statementing for children? It is vital that NF1 is included on the list of progressive conditions as far as the DWP is concerned. Will the Minister be prepared to liaise with the DWP on this? Finally, can the national research strategy be amended to ensure that there is sufficient research into the treatment and causes of NF1?
I end by paying tribute to the specialist doctors, nurses and other clinicians who play such a critical role in providing help to patients affected by this condition. I pay tribute to the Neuro Foundation and Funny Lumps, which are very small charities indeed, consist of dedicated volunteers and are backed by a small number of part-time very hard-working staff who champion the cause of people with NF1 and NF2. I also pay tribute to the parents and carers of those with this condition who are utterly dedicated to supporting their children. Most importantly, people with NF1 deserve better.
(11 years, 1 month ago)
Lords ChamberMy Lords, how many meetings have been held between Ministers and representatives of the alcohol industry since the last election? Why are the Government delaying the publication of the Chief Medical Officer’s review of safe drinking levels until after the election? Are the two connected?
No, my Lords, they are not. The Government have regular dialogue with the industry, but the industry does not formulate policy and never will do. There has been a delay on the new guidelines; the consultation on them had been planned for December last year but will not now happen until shortly after the general election. That is simply due to problems with Public Health England commissioning expert advice on guideline methodologies, which took longer than intended. The academic body that PHE wanted to do the work decided that it did not have the capacity to do so. A tender exercise was therefore necessary and the work is being carried out by a team from Sheffield University.
(11 years, 1 month ago)
Lords ChamberMy Lords, as this is a general debate on the NHS, I remind the House of my interests as a consultant trainer with Cumberlege Connections and president of GS1. As I am going to raise the Cancer Drugs Fund, I also declare that a relative of mine, Joe Wildy, is an employee in the government affairs department of Sanofi.
I, too, congratulate my noble friend Lord Turnberg on securing the debate and on the quality and breadth of his opening speech. It is clearly timely; never has the health and social care system been under so much pressure.
As many noble Lords have suggested, this pressure can only grow with technological and medical advances, and the sheer fact that the number of those aged over 80 will double by 2037. Implicit in the Motion of the noble Lord, Lord Turnberg, is the question of whether a comprehensive service is still feasible and affordable. I have no doubt that it is but nor do I doubt the scale of the change that the NHS must effect to ensure that sustainability. I have identified seven key areas of change. First, we have to undo the damage caused by the Government’s 2012 Act without undergoing a huge restructuring, as my noble friend Lady Wall said. Secondly, we have to ensure a sustainable funding regime for the NHS and social care. Thirdly, we have to integrate health, mental health and social care. Fourthly, we have to invest in and re-energise primary care. Fifthly, we need a much more assertive public health programme. Sixthly, we need more personalised care and innovation and, seventhly, we have to invest in and support a workforce to help us transform services.
It is a truth universally acknowledged that the 2012 Act has been pretty much a disaster. Despite all the protestations of Ministers, a huge amount of money has been spent and services have been fragmented, and too much energy is spent by all the players simply trying to keep the new system’s head above water. At a time of real crisis in emergency services, it is palpably clear that no one is in charge locally or nationally. My noble friends Lady Jay and Lady Wilkins, and the noble Lord, Lord Mawson, identified the buck-passing of responsibility between a mishmash of clinical commissioning groups, commissioning support units, local area teams and health and well-being boards, which are all quite unable to show the required leadership.
It is the same at national level. Ministers, the Department of Health, NHS England, the NHS Trust Development Authority, Monitor and the CQC vie with each other, often conflict and certainly provide no clear leadership. No wonder the National Audit Office commented in November that it is not at all clear where responsibility for strategic change lies. Quite! It is not surprising that performance is problematic. The Government inherited an NHS that was meeting the then 98% four-hour A&E target. They reduced that to 95% but hospital A&Es have missed that target for 76 weeks, with many hospitals in the last two weeks declaring major incidents. It is clear that the service is under extreme pressure.
On resources, never has the NHS had to cope with a flat-line budget—which is essentially what it is—for such a long time in its history. The recent NAO report on the financial sustainability of the NHS makes for sober reading, as does NHS England’s Five Year Forward View. My noble friend Lord Liddle pointed out that the Chancellor’s intention to reduce public expenditure to 35% of GDP by the end of the Parliament means that the actual resources going to the NHS will be bleak indeed.
I want to ask the noble Earl about an aspect of the immediate funding problem, which concerns the Cancer Drugs Fund. In August last year, the Government announced additional funds for the CDF to ensure that as many people as possible could access these pioneering, life-enhancing drugs. However, I understand that six months later NHS England is poised to remove that access for unknown thousands of patients. What is the Government’s policy on the CDF?
I ask the noble Earl yet again about the money now being paid back by the pharmaceutical industry to underpin the cost of certain drugs, subject to a modest inflation figure every year. Where is this money being spent? Why is it not being spent on new medicines and new treatments, where surely it ought to go? Is it a fact that NHS England does not accept the agreement that the department reached, and that is why it is not playing ball in ensuring that the money is invested where surely it ought to be invested?
On funding, my party has committed itself to a £2.5 billion Time to Care fund. We also want to remove some of the wasteful costs of the current restructuring. However, we should listen to my noble friend Lord Warner on the gap identified by NHS England. The fact is that the 3% efficiency target is formidable, or heroic, as he said. We will have to tackle this one way or another.
We also have to tackle the integration of physical health, mental health and social services. We need personal care plans and a single point of contact. We can see the current problems, which my noble friend Lady Wall identified. We see the fruits of a lack of integration. First, adult care has been impossibly squeezed. This has forced frail older people to rely on the NHS as the provider of last resort. It also means much less support for people when they are ready for discharge from hospital. Delays then happen, with longer lengths of stay. That is the problem we face. Without a properly resourced social care system, and without integration, we are not going to be able to move away from it.
Then there is primary care. Is it any wonder that A&Es throughout the country—recently the Great Western trust in the south-west, the Walsall trust in the Midlands and the Royal Surrey County Hospital in Guildford—are having to warn patients to stay away? It is no wonder when people find it so difficult to see their GP. In the east Midlands, the CCG in Erewash reported that one in five patients had to wait a week for a doctor’s appointment. Barnsley Hospital in South Yorkshire recently surveyed patients, many of whom complained about difficulties in getting a local GP appointment. This has to be tackled. I remind the Minister that whatever one says about the contract, the fact is that this was not a problem in 2010, even though the period between 1997 and 2010 had seen a steady increase in the number of patients coming through the door.
Investment in primary care has definitely fallen behind, and a workforce crisis is emerging. One good start would be for the Secretary of State to desist from his thoughtless attacks on GPs. We have pledged to use part of our £2.5 billion Time to Care fund to recruit more GPs, but we need to do much more to bring GPs into the core of the system. I remind the noble Earl, Lord Howe, that when Andrew Lansley proposed the 2012 reforms, he said that the reason was that, “GPs spend all the money and we want to give them the levers because that will effect change”. However, the huge gap in the system is that clinical commissioning groups seem to have no impact whatever on the performance and behaviour of GPs. I thought that that was the whole purpose of delegating budgets to CCGs. The reason, of course, is that the contract is held with NHS England, which has been quite unable to impact on the performance of GPs.
My noble friend Lord Rea talked about public health. I certainly agree with him and NHS England on its five-year plan. It says that we need a radical upgrade in prevention and public health. It says that it will back hard-hitting national action on obesity, smoking, alcohol and other major health risks. That is very welcome. The question I would ask the noble Earl, Lord Howe, is whether the Government will let NHS England do that—because I have to say that the Government’s record on public health has been very disappointing indeed.
There is one other area that I have time to mention: the adoption of innovation in the National Health Service. The noble Earl knows that he and I share the concern about the slowness of the NHS to adopt new treatments and new medicines. Surely, given our fantastic life sciences, and the strength of our pharma and medical devices industries, we have to find a way to encourage the NHS to move to adoption much more quickly than heretofore. I certainly hope that in his winding-up speech he can say a little more about how we are going to do that.
(11 years, 1 month ago)
Lords ChamberMy Lords, I join the Minister in paying tribute to the staff of the NHS who are facing such a pressurised situation at the moment. Does he accept that, for all the actions that he has listed today, the fact is that too many vulnerable people are currently being exposed to too much risk in the NHS as a result of the crisis in A&E? How many hospitals have declared major incidents in the past two weeks? Does he agree that the crisis has been caused principally by the savage cuts in social care and the chaos caused by NHS reorganisation? Why have the Government overseen the closure of dozens of NHS walk-in centres? Why did the Government oversee the replacement of qualified NHS nurses in NHS Direct by unqualified call-centre staff in NHS 111, who have computers programmed to encourage people to go to A&E? When will the Government get a grip?
My Lords, the noble Lord will understand that I am under instructions to keep my answers brief, in the nature of Urgent Questions. To cover his main points, though, we have made social care a priority at the same time as protecting the NHS budget and reducing the deficit. Since 2010 we have allocated additional funding from the NHS each year to support social care worth £1.1 billion in the current year and £2 billion next year. With regard to walk-in centres, there is no evidence that the closure of those centres, where that has occurred, has resulted in additional A&E attendances. A Monitor report in 2013 found that closures were often part of reconfigurations to replace walk-in centres with urgent care centres co-located with A&Es. On NHS reorganisation, I simply point out to the noble Lord that the pressures that we are seeing in the English health service are replicated just as strongly in the NHS in Wales, Scotland and Northern Ireland. Our A&E departments are in fact coping even better than those in the devolved Administrations.
(11 years, 1 month ago)
Lords ChamberMy Lords, it is a great pleasure to speak in my noble friend’s debate, and I warmly welcome it.
We would all pay tribute to the medical profession in the UK. We clearly have much of which to be proud. Equally, I agree with my noble friend that we should guard against the risk of complacency and always aim to sustain the current level of competence and try to enhance it.
I shall put to the Minister five points about training, continuing professional development, the use of simulation techniques, the adoption of new practices and medicines and the issue concerning medical negligence raised by noble friend Lord Turnberg.
I have been reading the Shape of Training report, led by Professor David Greenaway that looks at the future training requirements of doctors. It makes very sensible reading. I wonder whether the Minister can say something about the Government’s intentions on this and especially about the role of Health Education England. I draw his attention particularly to the fact that we need more doctors who are capable of providing general care in broad specialties across a range of different settings. The report states that this is being driven by a growing number of people with multiple co-morbidities, an ageing population, health inequalities and increasing patient expectations.
The Minister will recollect the work of the Royal College of Physicians on the new hospital, where it made the point that alongside specialists we need generalists who can co-ordinate care. Does the Minister think that that ought to be incorporated in the future training of our doctors? By definition, or certainly by implication, that means that greater prestige needs to be given to generalist doctors alongside the highly specialised ones.
I have also had the benefit of discussions with Dr Kieran Walsh of the BMJ in relation to medical education. The key point that he has put to me is that we need to look at inter-professional education. Healthcare professionals no longer work in silos, but in teams, but healthcare professional education still occurs mainly in silos. Again, are the Government working through Health Education England to do something about that?
I have had further discussions with Professor Stuart Carney, the dean of medical education at King’s College, concerning continuing professional development. As the Minister knows, this was introduced into the National Health Service some years ago but subsequently, of course, the revalidation of doctors was also introduced. Is he able to say something about the initial outcome of revalidation? There is a worry that both continuing professional development and revalidation can become a tick-box exercise rather than a focused approach to improving and enhancing the quality of medical practice. Perhaps he could say something about that. Again, that relates back to the Shape of Training report.
The fourth point I would like to raise is about the use of e-technology and simulation and how we can harness new technologies in the development of medical competence and skills. The Minister will know that around the country there are a number of simulation centres where doctors and other clinicians can take part in sessions that are designed to simulate clinical practice. That enables trainers to put doctors and other clinicians under pressure to see how they react when faced with multiple pressures at the same time. The problem is that it is all very voluntary at the moment. Can we look forward to a time when we can expect simulation training and regular updates to be a mandatory part of the life of doctors?
My fifth point is an issue that I have raised and discussed with the Minister on many occasions. In this country we have first-rate life sciences. We have a fantastic medical health technology and devices industry, but we know that the NHS is very slow to adopt new medicines and new techniques even though they have been proven to work. Will the Minister say a little bit about how we can encourage the NHS to move to adoption much more quickly? Can we use the new PPRS agreement on drug costs, for instance, as a way of incentivising the adoption of new medicines?
Finally, my noble friend Lord Turnberg asked about medical negligence. The Minister will know that there is an alarming rise in the payout of claims, which is probably unsustainable going forward. I cannot believe that the quality of medical practice is getting worse. It is something to do with the number of claimants and the action of the courts. I know that the medical defence organisations are very concerned, as well as the NHS Litigation Authority. In the short time that is available, is he able to say that this is something that the Government are at least keeping under review?
(11 years, 1 month ago)
Lords Chamber
To ask Her Majesty’s Government what action they are taking to address the increase in alcohol-related disease.
My Lords, we have set out the Government’s approach to reducing the incidence of alcohol-related disease in the Government’s alcohol strategy. Our ambition is to radically reshape the approach to alcohol and reduce the number of people drinking to excess. We are seeing encouraging signs of change, with the first significant fall for some years in alcohol-related deaths in England in 2012.
My Lords, I am sure the whole House would wish me to congratulate the noble Earl on being nominated by Health Service Journal as the 29th most powerful person in the National Health Service.
Coming in at 95, I look on with admiration, but from some way behind. Did the noble Earl notice that a Mr Lynton Crosby came 50th in that list? Does he think that that reflects the rather close relationship between the Conservative Party and the drinks industry—and does that explain the outrageous delay in the publication of the Chief Medical Officer’s review of what safe levels of drinking should be?
My Lords, I am sure the noble Lord would not expect me to agree with him on the position of Mr Crosby in relation to the drinks industry. We feel it right to engage with the industry because it is in a position of influence over consumers, and we have seen, through the responsibility deals, some real progress, which it has instigated at our prompting. I recognise the issue that the noble Lord raises on price. That, of course, is only one aspect of the issue of alcohol consumption and its prevention.
(11 years, 2 months ago)
Lords ChamberMy noble friend makes a very important point. As he will know, the UK signed the World Health Organization code of practice on the international recruitment of health personnel. My department worked together with the Department for International Development to produce a definitive list of developing countries—based on economic status and the availability of healthcare professionals—that should not be targeted for recruitment. He may like to know that the WHO is planning an assessment of the implementation of that code of practice and is due to report in 2016. However, we are mindful of the point made by my noble friend. Particularly with the Ebola crisis, it is important that we are sensitive to the serious issues that pertain in Sierra Leone in particular.
My Lords, given that, and given the Health Select Committee’s recommendation that although the contribution of overseas staff to the NHS should be celebrated, we should not be dependent on significant flows of trained staff from overseas, does the noble Earl still agree with the decision in 2012 to reduce the number of medical school training places by 2%? Does that not need reviewing?
My Lords, as the noble Lord is aware, we rely on Health Education England to determine the number of training places that the NHS needs going forward, looking at not just the short term but also the medium to long term, informed by the work of the local education and training boards. That is as good a system as we believe we can get. Health Education England is properly funded to do that and we must rely on its expertise.
(11 years, 2 months ago)
Lords ChamberMy Lords, the report contains a number of important recommendations which we will consider. This report was commissioned by NHS England for NHS England, to make recommendations for a national commissioning framework under which local commissioners would secure community-based support for people with learning disabilities and/or autism. It is an important report, it is right that we take a bit of time to digest it, and, together with NHS England, we are looking carefully to do just that.
My Lords, can the noble Earl clarify something? He knows that NHS England set a target of June 2014 to stop placing people with learning disabilities in inappropriate in-patient facilities. It appears that that has not been followed through by clinical commissioning groups. Can he confirm that, and say whether the Government will discuss with the regulator, the Care Quality Commission, whether a moratorium on the approval of new registrations for inappropriate in-patient facilities will be considered as part of the reforms that need to take place?
The noble Lord is quite right that progress has not been nearly as swift as we, or indeed anyone, would have liked. NHS England has stated its ambition to achieve a 50% reduction in the number of people who were in in-patient beds on 1 April this year by March 2015. Although the latest data for November shows that some 2,600 people were in in-patient settings, the number of people with a transfer date has gone up by more than 1,100 in the last three months, so progress is being made. On CQC registration, the CQC may at any time decline to register or indeed cancel the registration of a provider where it is failing to comply with the registration requirements set out in law. That includes the new duty of candour and the fit and proper persons requirement, which came into effect at the end of last month.
(11 years, 2 months ago)
Lords ChamberMy Lords, the noble Earl made it clear in answer to my noble friend that academies are not subject to the core nature of the curriculum as regards sex and relationship education. As he will know, there have recently been a number of inspections by Ofsted that have shown up defects in the approach of schools to sex and relationship education. Surely that gives rise to concern that the issue of stigma is simply not being addressed properly in some schools. Is his department willing to take this up with Ofsted?
(11 years, 2 months ago)
Lords ChamberThe noble and learned Baroness is absolutely right. Those who are at risk of partner violence are of course at greater risk of contracting a sexually transmitted disease. We know this to be true particularly in countries overseas. The work to combat domestic violence, which the noble and learned Baroness is very familiar with, continues. It is vital, not just in this area of work but more generally in the field of mental health, to ensure that women at risk of violence—particularly women—have a place of refuge and a source of advice.
My Lords, I am sure that the new money would be even more welcome if it had not consisted of quite a lot of old money rebadged. The noble Earl referred to the three-year HIV prevention campaign, which promoted testing and condom use. Perhaps I might ask him about how the campaign will go forward. Are the Government going to fund such a campaign and for how long, and can he say what proportion is going to be spent in the future compared with the past?
My Lords, the Terrence Higgins Trust is the vehicle through which we conduct campaigns. Terrence Higgins has a three-year contract, which ends in March next year. We have yet to finalise all our spending commitments from April 2015. We expect that the funding for Terrence Higgins will have to be pared back by some measure because of the current funding constraints, but we are in discussion with Terrence Higgins about that.