(2 years ago)
Lords ChamberMy Lords, I thank the noble Baroness, Lady Thornton, for bringing this important subject to the House. I have a very close relative who has had ME for a number of years, and I have seen at first hand how debilitating and life changing it can be. I have become the vice-chair of the APPG for ME and I have talked to hundreds of ME patients who have had their condition ignored or ridiculed. They have been subject to inappropriate and sometimes dangerous medical intervention, and they are struggling with an employment and benefits system that simply does not acknowledge the realities of their condition. Those 250,000 ME patients are now, in effect, being joined by over 2 million long Covid sufferers.
It is worth starting by pointing out that debilitating post-infection syndromes such as long Covid are not new clinical entities. In American medical literature, ME-like symptoms are described as far back as 1934. When ME was first noticed in this country it was described as “yuppie flu”, but in fact these syndromes affect millions of people suffering from a range of viruses, including those living in poor, third-world countries.
The Institute for Fiscal Studies estimates that one in 10 people with long Covid have given up work, with “persistent labour market effects”. This month’s Lancet said that
“post-acute infection syndromes could pose a substantial public health burden in the near future if appropriate measures are not … taken”.
Despite the huge economic cost they inflict, as the noble Lord, Lord Bethell, said, post-viral illnesses have been neglected, dismissed and under-researched for far too long. We still have no diagnostic blood tests for either long Covid or ME.
As well as the breathlessness, chest pains and loss of taste or smell which characterise long Covid, patients exhibit a cluster of symptoms such as the debilitating fatigue, post-exertional malaise, cognitive dysfunction, PoTS and sleep disturbances that are also diagnostic of ME and other post-infection syndromes. While all the funding for research into long Covid must be welcomed, it is disappointing that some researchers are still ignoring or are not aware of what has already been learned about what may be causing ME and how this could help us to understand the causes of long Covid.
Almost 40 clinical trials into possible treatments for long Covid have been registered, some involving interventions that have already been assessed in ME. Some of these treatment trials have small sample sizes or no control groups. The lessons do not appear to have been learned from the use of poor-quality methodology in many clinical trials involving ME. Some health professionals who are managing people with long Covid are unaware of or ignoring what we have learned about the management of ME and other post-infection syndromes, on activity and energy management particularly. The ME charity sector produces excellent information on symptom and energy management, as does the new NICE guideline, but people with long Covid are often simply unaware of this information, as are many health workers.
Another important lesson that needs to be learned from ME is that misdiagnosis can occur when people with chronic fatigue are not properly assessed and are labelled as having a post-viral syndrome. There are some very disturbing cases being reported of people having long Covid when, in fact, they have another medical condition. A Suffolk councillor recently featured in the news when, it turned out, her long-standing diagnosis of long Covid actually proved to be lung cancer.
Research into the cause and diagnosis of, and effective treatments for, long Covid could help those with ME. The ME Association has requested that clinical trials for long Covid treatments include a group with ME. What has been learned about the management of ME can help many people with long Covid.
Harlan Krumholz, a cardiologist at Yale, said:
“No one wanted the pandemic, but sometimes a jolt to the system can create innovation in ways that wouldn’t have occurred otherwise”.
That should be our guiding principle.
(3 years, 1 month ago)
Lords ChamberI understand that NICE wants to publish these guidelines as quickly as possible. It is very aware that there have been two delays: first, to make sure that it took on board the various comments; and secondly, the current delay because of issues raised by some clinician groups. As noble Lords will understand, NICE is independent from the Government. It hopes to progress this issue by having the roundtable, hearing all the different views and seeing if some consensus can be reached before the guidelines are published.
Does the Minister accept that the prevailing view in some quarters that ME is a psychological disease is causing untold harm, including to children and young people, who are being forced to accept treatments which are damaging to them, and to their parents, who are sometimes accused of abuse? Taking time to achieve consensus is one thing, but the Minister should be aware that there is a huge cost to this.
It is always important to recognise the unintended consequences and the costs of any delay. I can understand the frustration of many who have ME/CFS at the delay to the publication of the guidelines. It is important that we try to get as much consensus as possible. If noble Lords feel that there are further delays, I hope they will write to and put pressure on me and wider stakeholders, so that we can put pressure on NICE, but it is important that we try to achieve as much consensus as possible.
(3 years, 5 months ago)
Lords ChamberMy Lords, I will focus my remarks on the wonderful work done by voluntary and community groups during the pandemic—as well as the rest of the time—particularly in the area of social care. We owe them an enormous debt of gratitude.
I declare an interest as a trustee of Community Action Suffolk, the infrastructure body for the county. I am also a member of the advisory body of the Institute for Volunteering Research in Norwich. I can recommend that all Peers with an interest in these matters take a look at the research being done there.
Volunteers bring a user-based focus and use their personal commitment, time and skills to make the social care system more resilient. In this way, society becomes more resilient. However, they are complementary to—and not a substitute for—properly resourced public services and professional staff. Volunteers can play a significant role, but government needs to use the existing knowledge and evidence as the basis on which to build effective and sustainable volunteering efforts.
Covid-19 has highlighted much of what we already knew from this evidence. The voluntary sector best supports individuals when it is linked with statutory services and not kept disconnected from them. A key achievement of Community Action Suffolk throughout the pandemic has been to have a seat at the table to ensure that the response of all the voluntary organisations in the county is dovetailed with statutory services. That way, we have been able to link volunteers with shielded individuals, support food banks, assist school testing programmes, and much more.
The Institute for Volunteering Research has shown just how important these infrastructure bodies are. As the demand for their services and the volunteer base grew, their role became more important. But not all areas have these. They are underfunded and not universal.
As people return to work, the sustainability of the volunteer base is in question. Older people are re-evaluating their lives in the same way as are so many of us. Further research by the IVR has shown that attempts by national government since 1948 to direct volunteer efforts centrally have been largely ineffective. Further research by the ESRC has shown how the devolved Administrations have taken a significantly different approach during the pandemic.
Levelling up should not just be about infrastructure in certain geographic areas. There are huge variations in social capital, access to community assets and people’s capacity to help one another. Government departments need to use the available evidence and consider working with funders to create an observation study to find a clearer picture of the disparities which exist and to build a response to them.
(3 years, 8 months ago)
Lords ChamberMy Lords, the noble Baroness, Lady Thornton, has already mentioned the Joint Committee on Statutory Instruments. I have served on that committee for about two years now. It is one of the less well-known workhorses of the parliamentary scrutiny system. It is very technical in nature and staffed by a very effective and thorough legal team. It is always a busy committee but recent years have been particularly active, with the continued volume of EU exit SIs and those, such as the measure today, relating to the pandemic. When you strip away all the legal technicalities, at root the committee is concerned to see that the law is correctly applied and that agreed parliamentary procedure is adhered to.
This SI and others like it are a very good example of the kind of issues that the committee highlights because it is rather exercised by them. In this case, “variant of concern” and “variant under investigation” are used but with no definition or meaning. The department has said that they do not need to be defined here because they have a commonly understood meaning in the scientific and health community. In practice, that may be true but there is an important point here: the law should be unambiguous and understandable to everyone. There are other examples where the department has included a definition, so it is not even being consistent.
Secondly, without going into the detail of our report there are drafting errors, which the department acknowledges. Three of them have had to be corrected by a subsequent instrument and the fourth, it says, will be. This is not a criticism of the department—drafting at pace is challenging—but it highlights how hard it is to keep track of exactly what Parliament is passing.
The committee has concerns about many trends and will shortly produce a special report which highlights them. The conflation of statute and guidance has exercised the committee and other noble Lords. This, compounded with the practice of government announcements and their attendant publicity, followed by regulation that does not match, is a major concern.
The noble Lord, Lord Desai, has withdrawn so I call the next speaker: the noble Lord, Lord Naseby.
(3 years, 9 months ago)
Lords ChamberAs ever, my noble friend is extremely perceptive in his insight. The Moderna vaccine is indeed an interesting one that may well prove to be a useful complement to the Pfizer and AstraZeneca vaccines, which are the bulwarks of our vaccination deployment at the moment. As he probably knows, the MHRA has already sanctioned the use of existing vaccines in some children where there may be a strong clinical need, and under the advice of their clinicians. However, it is our aspiration to spread the vaccines as widely as possible. Unfortunately, children are a vector of infection and it may be that there are strong arguments for vaccinating not just vulnerable children, but perhaps a large number of children. We will look at various different vaccines for that, and Moderna may possibly be a candidate for the kind of A-B double-dose vaccine that I alluded to earlier.
My Lords, as we move towards group six, we are getting into a rather complex situation where vaccination is not determined only by age but by health conditions and their severity. Can the Minister say something about how we will communicate to the public the kind of conditions and the level at which they have them that will lead them to be vaccinated so that people have a clear understanding and GP practices are not inundated by the task of having to give that information out?
The noble Baroness is entirely right. We are entering a different phase of the rollout where definitions are not based so clearly on age and where more choices have to be made. Noble Lords have raised special groups and interests for which they have made a good case for them to be prioritised. We are reaching the moment when that communication will be made more clearly. I cannot say for certain what it will be because I do not yet have the information in my gift. However, I reassure the noble Baroness that, when that moment comes, the communication will be done very clearly and all the arguments that have been made in this Chamber will be listened to.
(3 years, 10 months ago)
Lords ChamberMy Lords, there is no doubt that the appearance of this new variant has taken us into a very difficult situation. As welcome as the vaccine is, we have to acknowledge that getting the whole country protected will not be a very quick process. Therefore, the measures that we take, individually and collectively, while we wait to be vaccinated are absolutely key.
I want to ask the Minister two questions. First, what work is going on to reassess the protocols and procedures that have been developed for workplaces, schools, places of worship and so on to ensure that systems which were fit for purpose with the original virus continue to be so with one that is more transmissible?
Secondly, on an individual basis, I acknowledge that this is anecdotal but I am hearing a lot of stories about people who contract Covid and say that they have no idea how they caught it because they have been really careful and have followed all the guidance and procedures. Is any reassessment going on of the sorts of behaviours that many of us have fallen into the habit of adopting? Are those preventive measures still fit for purpose or should we be protecting ourselves and others differently?
Finally, on a different matter, there is a huge role to be played in a vaccine rollout by volunteers, not just as injectors but in a whole range of ways. My plea to the Government is not to rely on a centralised system of the kind we saw last year, as that just does not work. There is a lot of good will but it needs to be harnessed and used locally, because that is where it can be used to best effect.
(4 years, 2 months ago)
Lords ChamberIs the noble Lord aware of the situation at Banham Poultry in Norfolk where, as of this morning, 104 people at the factory have tested positive and the public health director has reported that only 52% of contacts have been traced? This has led to the local authority bringing in a company to see if it can improve that figure. What conclusions are being reached as to why, in this instance, there is such a low rate of positive contact with people who may be affected?
The truthful answer to the noble Baroness is that I know that there is an outbreak at Banham but I do not know the operational details of the kind she describes. What I can say is that the system is deliberately constructed so that a local director of public health, or the local authority, has the option, if they think it has local relevance, to bring in the resources that are needed for any particular arrangement. If, for some reason, a local director of public health, or the local infection control team, sees an opportunity for bringing in outside resources—a charity, a company, a technology—that is entirely appropriate and welcome. That is exactly the kind of local intelligence and expertise that we depend on to be effective. A central track and trace operation cannot do everything; that point that has been made in this Chamber hundreds of times and is a point that we entirely embrace. I am, in fact, hugely encouraged by the anecdote the noble Baroness tells.
(6 years, 6 months ago)
Grand CommitteeI too thank the noble Lord, Lord Touhig, for tabling today’s debate and pay tribute to him and other noble Lords around this House who champion the cause of people with learning disabilities and learning difficulties and those on the autistic spectrum. As we have heard, that group includes some of the most vulnerable people in our society, for whom our advocacy and that of others is essential in ensuring their basic safety, that their needs are met and that their quality of life is the very best it can be.
I wish to focus my brief remarks on this question of advocacy, and to do so from the perspective not of someone with clinical or personal experience, but as the patron of a Suffolk charity, Ace Anglia, which does wonderful work in this field. In this world of care pathways, detailed measurements and performance indicators, there is a danger of creating care by algorithm, which loses sight of the individual. I heard from a specialist nurse about the difficulties of defining learning difficulty and learning disability. The result of that nuance is that you can end up with your name not on the learning disability register, so you do not get called for a health check, and then the danger of undiagnosed health conditions can increase.
A learning disability adviser to the NHS told me that, as someone with a mild learning disability himself, he was convinced of the need for more people like him in paid NHS roles because, “They know how things should be like”. That is why it is crucial to have high-quality local advocates, such as Ace Anglia, which work with individuals on a one-to-one basis to improve their lives then, crucially, turn that experience into valuable learning, which can then be used to help others. I have been told by a number of people in health and social care in Suffolk that the work of Ace has been a real catalyst for cultural change and has created what they have described as “real-world understanding”.
Ace holds regular get-togethers around the county for its users, which are used to share experiences of services such as the NHS or public transport. It provides good qualitative evidence to local service providers. The organisation has become expert in facilitating that sort of event so that users can feel genuinely empowered in what can be a hostile system. Ace has been commissioned by its local clinical commissioning group to produce 20 easy-read resources to support people with learning disabilities in navigating their way through primary care services. These will give people more knowledge and control over their health and allow for better communications. So much depends on having a local group as effective as Ace and on the personal relationships that they can build with the key people locally in the NHS, or social services. Could the Minister reflect on how these local support networks can be helped to thrive right around the country?
(9 years, 11 months ago)
Grand Committee
To ask Her Majesty’s Government what assessment they have made of the role of the voluntary sector in reducing emergency re-admissions to hospital.
My Lords, it is about a year since I first tabled this Question for Short Debate. I was inspired to do so by reports from the Royal Voluntary Service which described the impact of its Home from Hospital schemes. I regret that, having waited all this time, the Motion was in the end tabled at very short notice, which prevented many Members who would have liked to participate doing so. Given that it appeared on the Order Paper only on Wednesday and that the speakers list was closed on Friday, that comes as no surprise. I am particularly grateful to both Front Benchers and my noble friend Lady Thomas, who will speak in the gap. For the record, I give an assurance that the modest speakers list does not reflect the level of interest in this matter.
I am not one of the usual contributors to debate on health matters, so I thought long and hard before venturing into this area, but I do know about the voluntary sector, and here I declare an interest as chair of the National Volunteering Forum, and it occurred to me that I should table the Motion precisely because I do not come at this from a health expert’s perspective. We have all agreed that the time for silos is over.
It seems a long time ago now, but in 2010, the Secretary of State for Health took measures to manage emergency readmissions, which had risen, in part at least, because hospitals were reducing the length of stay. Despite this, about 19% of emergency readmissions—about 190,000—occurred in 2012-13. The evidence shows that people from lower socio-economic and vulnerable persons groups are at a higher risk of avoidable emergency readmission.
The Government and the NHS have made a good start on getting to grips with this problem by creating individualised discharge plans and ensuring that hospital-led discharge teams provide continuity of care. Of course, the better the integration of primary, secondary and social care, the better the contribution by prevention, early diagnosis and self-treatment. However, as Simon Stevens noted in the NHS Five Year Forward View,
“voluntary organisations often have an impact well beyond what statutory services alone can achieve”.
Last week’s report on patient-centred care from the Royal College of General Practitioners makes specific reference to the role played by community groups and the voluntary sector in achieving self-management of health conditions. Also last week, the NHS published Stephen Bubbs’s report into the commissioning framework for people with learning disabilities and autism, in which he, too, notes the role played by the voluntary sector in the sort of community-based support which reduces both initial admissions and readmissions. It is an area that I am beginning to know well as a fairly new patron of ACE Anglia, which provides just that kind of advocacy and support to people with learning disabilities and autism living in my area. Of course, they are all right. Voluntary organisations can help with early intervention by spotting problems early on and by helping to join up fragmented services. They often bring specialised and local knowledge and, precisely because they are not from the statutory sector, they tend to be trusted.
Provision of hospital-to-home services in a range of contexts can often give patients the time and space they need to make a recovery and avoid readmission to hospital, with all the trauma that that entails. The British Red Cross gave an example of Mrs Jones, a widow in her mid-80s suffering from dementia. Discharged from hospital but needing treatment for a urinary tract infection, staff referred her to the BRC, which arranged for a volunteer to meet her in hospital and then visit her at home to make sure that she completed her course of medication. It ensured that the social services team was aware of her needs, and that she felt supported. She not only recovered well at home but, because of the ongoing support and encouragement she received, her quality of life actually improved on a long-term basis.
AGE UK Cornwall carried out a pilot scheme where volunteers worked closely with patients to identify their needs and offer support. It acted as a key link with the NHS and social services. Under that scheme, emergency readmissions were reduced by 25%. The Midhurst Macmillan Service is a specialist palliative care service covering a 400 square mile area of rural England across three counties. By offering a host of roles from shopping and gardening to emotional support for the patient and their family and liaison with the NHS, the scheme is aimed at reducing the number of hospital admissions. Although they are not strictly emergency readmissions, nevertheless, its work is very successful: 73% of its patients died at home or in a hospice rather than having to be admitted to hospital.
In its recent report, Going Home Alone, the Royal Voluntary Service highlighted its own scheme in Leicestershire which showed that a package of support reduced emergency readmissions by half, from 15% being readmitted in 60 days to 7.5%. It was not rocket science. Contact was made with patients before they left hospital, and someone went home with them and made sure that the house was warm and lit, and that some food was available. They offered support to collect prescriptions, make follow-on medical appointments and liaise with the statutory services. Many of these actions are so simple, but make so much difference. However, like many simple things, they are not always easy.
Like most other services, voluntary organisations have had to deal with funding cuts. In many cases, when they wish to bid to provide services, they are disadvantaged against the private sector because they want to provide decent terms and conditions for their staff and are not going to go down the zero-hours contract route. In some cases, these organisations simply lack the capacity to engage in complex and expensive tendering processes.
The reorganisation of health and social care at a local level has meant that new relationships between the sector and the commissioners have had to be developed. Some health and social care providers are simply not aware of the range and extent of the work of the voluntary sector in their area and so patients miss out on the support they can offer. Then there is the vexed question of substitution. Volunteers do not want simply to replace public services which have been cut, but want to add value.
What we are now calling austerity looks likely to be the new norm. It is hard to take that on board, but we should be planning for it. Government spending should be much less reactive and give some priority to preventive spending, which involves a genuine forward look at the likely impacts of spending decisions made now on outcomes in a decade hence. Policy and funding changes which push costs off into the future are no different from borrowing, and the sooner we understand that, the better.
I am looking forward to hearing from other Members about how we can better harness the collective strengths of the statutory services and the voluntary sector. The old dividing lines have become blurred and the picture has become more complex as a result, but the need has never been greater.
(11 years, 11 months ago)
Lords ChamberMy Lords, I thank the noble Baroness, Lady Pitkeathley, for securing today’s debate. Like the right reverend Prelate, I am not one of the usual suspects; I rather share his nervousness about stepping into this. However, as the chair of the England Volunteering Development Council, I want to speak today to talk a little about the role of volunteers and the voluntary sector as they relate to social care.
Of course, people are living longer across all age groups, with much more complex needs, and there is a rightful expectation that they will be cared for. The noble Baroness, Lady Campbell, was quite right to set this in a human rights context. The strain of trying to provide social care and the scale and cost of this provision have been well highlighted in the briefings from the LGA and the NHS. It still begs a response from the Government. While I accept that Dilnot is not the answer to everything, it still represents the best that I have seen in many years. Therefore, I am also looking forward to hearing what the Government might say. I was very taken by the comments of my noble friend Lord Sutherland about the worry and stress on individuals who are concerned about what may face them as they get older.
In medical terms, this is not a crisis but a chronic condition. The situation has been getting worse for many years, as my noble friend Lady Gardner points out; it did not start in May 2010, nor will it end at the end of this Parliament. We therefore have to look at more long-term sustainable solutions, of which I would argue the voluntary sector is a part. That is particularly the case with the growing concern about the quality of care and the isolation and vulnerability of people, either in private care settings, as we heard in the Southern Cross case, in their own homes or even in hospitals, as we saw in the recent reports from the Patients Association and the CQC.
Set against this, there is an important role for volunteers to play in the care of vulnerable people as befrienders and advocates, and in complementing much of the work of the statutory services. I was pleased that my noble friend Lord Shipley made the point that older people are also of huge benefit to society. We must not always couch the “aging population” debate in negative terms.
The genuine integration of social care cannot happen unless there is a real community dimension to it, and that means using volunteers. For example, we need to have a proper look at how care homes can be opened up to the community, with more volunteers going in to offer personalised support, friendship and advocacy, and helping to generate a better quality-of-life experience. No regulator can be on hand all the time, nor can they see everything. Indeed, in my experience, regulators operating within statutory frameworks, subject to legal challenge and so on, often focus on systems and fail to be centred on individuals. As a complement to the work of regulators, volunteers can be around to see that individuals’ interests are foremost.
Volunteers can add enough support to enable someone to stay at home instead of in hospital. It is a much more humane as well as cost-effective approach, a point made well by my noble friend Lady Barker. Indeed, having someone around a little more of the time who can spot problems in earlier stages can reduce the need for later acute visits and hospitalisation. There are some very good case studies in the briefing from the WRVS.
I noted with interest last week the PM’s announcement on dementia, which came the week after an announcement that prisoners on release would be provided with one-to-one support. Both of these initiatives will rely on volunteers to deliver them. I make two points to the Government on this. First, the enthusiasm for volunteering that we saw during the Olympics had a lot to do with involvement in an iconic, one-off event. It is a different proposition to go from that one-off commitment to a weekly commitment to one individual who can have very difficult needs. Secondly, volunteering is not free. The Government have to put money in to recruit volunteers, to sort out the ones who are suitable and to train and organise them. The great lesson that we should learn from the Olympic volunteering programme is that it worked because the money went it to make sure that it worked.
Moving from individual volunteers to voluntary organisations, a piece of work needs to be done, on which I am sure that Volunteering England would be happy to work with the Government, on the placement of volunteers in care homes. I recognise that placing volunteers in a commercial operation is a controversial proposition. We probably need to do some work to develop protocols for that, as I know that Volunteering England already has with the rather tricky question of job substitution.
It is just over 20 years since I went into local government. At the start we always just talked about inputs; it was about how much we were spending. Then we started thinking about the outputs, and then finally we started talking about outcomes. Voluntary organisations by their nature are focused on outcomes; it is what they do. The conundrum now is that, with tight budgets, the focus on outcomes runs the risk of becoming lost. For example, a local charity or social enterprise that uses ex-offenders to deliver a lunch club to older people has multiple benefits, but they are quite hard to monetise. Outcome-based procurement requires commissioners to be much less prescriptive about how something is delivered and just to empower providers to deliver it. Commissioners often look down their noses at these soft outcomes—“Give us hard facts”, they say—but there is nothing soft or woolly about measuring the internal changes that service users experience.
There is a problem with commissioning. Public authorities are not good at seeing the added value that comes, for example, from giving contracts to organisations that use small local suppliers or those that employ long-term unemployed or people with mental health problems. Among local authorities and health authorities, procurement is the sort of area where cutbacks have resulted in fewer staff. They tend to take the rather easy route of offering single, larger contracts that are much less likely to deliver added value. Small to medium voluntary sector organisations and social enterprises do not always have the capacity to join in a lengthy bidding process. Even larger ones like CABs and volunteer centres are having their core funding cut. If you do not have core funding, you do not have an organisation to make robust bids. The social value Bill has been designed to get at some of this, but help is still needed to learn how to value certain things and to assist smaller organisations in the procurement jungle.
We should not still be having this debate; we have been talking about it for years. Therefore, will the Minister say something about how the new commissioning arrangements will work in this regard, and how he sees the voluntary sector interfacing with the health and well-being boards? I genuinely believe that the voluntary, community and social enterprise sectors have a fundamental role to play in securing and facilitating this community involvement and genuine integration of health and social care. However, it needs the Government to think carefully about their policies in a whole range of areas.