Neurological Conditions

Lord Dubs Excerpts

Thursday 9th June 2022 Grand Committee

Asked by

[Lord Dubs]

To ask Her Majesty’s Government what steps they are taking (1) to ensure that people with neurological conditions receive timely access to health and care services, and (2) to ensure that the sector’s workforce is properly staffed to deal with demand.

[Lord Dubs (Lab)]

My Lords, I welcome the opportunity to debate this matter in order to hear the Government’s plans to improve health and care services for people with neurological conditions and to ensure that the sector’s workforce is properly staffed and adequate to meet demand.

It is estimated that one in six people have a neurological condition. Living with such a condition can be a daily battle—a battle made harder by a system that turns away people who are in need of mental health support, where people experience waits of more than year for a few minutes with a specialist and where people do not get the information they need when diagnosed. Of course, in one sense, this is an invisible condition for many people. Some people have obvious neurological conditions but some do not and, because it is invisible, they do not get the care and support they would otherwise attract.

I thank some of the people with neurological conditions who have been helpful and the organisations that represent them, including the MS Society, the Neurological Alliance, the MS Trust, Overcoming MS, MS National Therapy Centres and the Migraine Trust, which provided briefings to inform my remarks today. Of course, I also thank the client engagement team from Parliament, which carried out a survey.

I should mention in passing that, yesterday, I went to a Carers Week event in the Attlee Room in Portcullis House. A lot of caring organisations—not necessarily those connected with neurology—were there to explain what they are about. It was a very impressive occasion, particularly in terms of the voluntary carers and the work they do. It left me quite emotionally drained when I heard how they cope and how people have spent years caring without any time off.

I should declare an interest. My son has MS, a condition that affects 130,000 people in the UK. It can be painful and exhausting, and can cause problems with how people walk, move, see, think and feel. It can gets worse over time. However, it can be managed—at least partly—through timely treatment, access to rehabilitation services, lifestyle changes and specialist support.

Yesterday, the Neurological Alliance published its report, Together for the 1 in 6. Unfortunately, I was unable to be there because I was in a Select Committee but I have managed to read the report quickly. It is based on a survey of some 8,500 people affected by neurological conditions across the UK. The data found that one in five adults waited

“more than 12 months between first seeing a GP and seeing a neurologist.”

More than half of people with MS had experienced long delays; I will not go through all the statistics.

In the year to March 2022, the number of people waiting for a neurology appointment on the NHS rose from 120,000 to 180,000, according to the latest NHS waiting times data. Some 37% of people are waiting more than 18 weeks for a neurology appointment. The Migraine Trust is calling for simple pathways for those who need to be referred to a neurology or specialist migraine clinic with reduced waiting times. We are talking about a situation where there are long waiting times and difficulties in getting access to mental health support. Most of the surveys support the finding that there is a lack of support; people therefore feel that the system has failed them.

Let me turn to treatments. The Neurological Alliance survey showed that 35% of adults with MS who require drug treatments in hospital experienced delays in accessing these essential treatments in the past year, including disease-modifying therapies. DMTs are a vital form of MS care as they can slow the progression of MS for some patients. DMTs need to be started as early as possible after diagnosis, which of course means that early diagnosis is needed, and prolonged delays between doses can be harmful. Of course, there is a difference between those people who have progressive MS and those who have relapsing-remitting MS. There are more therapies available for relapsing-remitting MS than there are for progressive MS. This is also made more acute because relapsing-remitting MS sometimes converts into progressive MS.

There are very few treatment options for people with progressive MS. There is a new one called siponimod. Although this should be good news, NHS data shows that, nearly a year after its approval by NICE, just 1.5% of those eligible have been able to try it. The problem is that there are long waiting times for some new therapies. It is vital that people with neurological conditions have access to symptom management treatments and evidence-based lifestyle changes. The MS Society found that only 10% of people with MS were able to access any form of symptom management treatments.

Some people living with MS use cannabis to alleviate their symptoms. Although there is a product called Sativex, very few—I think only 17.5%—of those for whom it would be helpful have access to it. Some people say that cannabis does not help, but my view is that where a patient feels that cannabis is helpful it is by definition helpful. It is no good a doctor saying there is no evidence it is helpful; if the patient feels it is helpful then it clearly helps.

I also thank the noble Lord, Lord Blencathra, who regrets that he is not able to be here this afternoon, for sharing his experience accessing fampridine, which has been helpful for mobility. However, again, NICE has decided to no longer prescribe this drug to selected new patients.

Let me talk briefly about the workforce in neuroscience. This is what I find quite shocking. According to the Association of British Neurologists, the UK ranks 44 out of 45 European nations for the number of neurologists for each person with a neurological condition. Adjusted for the population, France and Germany have over seven neurologists for every two that the UK has. These are absolutely unacceptable figures, which mean that the caseload for neurologists in this country is much too high and they cannot give each patient the treatment they need.

Let me turn very briefly to MS specialist nurses. Neurological nurses in the more general sense, but specifically specialist MS nurses, can provide excellent help. They provide a holistic approach. I believe that if the Minister was to do an assessment he would find that having MS nurses reduces the pressure on GPs and might even reduce hospital admissions. It could be financially helpful as well as beneficial to the patients. Some studies should be carried out to see whether this hypothesis can be borne out in fact. Many people with MS do not have access to MS nurses. The MS Society’s survey found that 63% of professionals were finding it extremely, or very, challenging to provide a good service to their patients.

Most of the problems I have discussed will not be overcome without addressing the chronic workforce shortages in neuroscience, whether neurologists, MS nurses or other specialists who can provide support. I would welcome the Minister’s remarks on what the Government are doing to attract, recruit and retain the neuroscience and other allied health professionals needed to deliver holistic care on a sustainable basis. The key is holistic care; there are piecemeal approaches, but holistic care is the most efficient and effective way of providing support. I believe that specialist MS nurses are a profession who can possibly co-ordinate support in a way that can lessen the burden on others. The NHS must take forward recommendations from NHS England’s Getting It Right First Time adult neurology report and must urgently explore opportunities to free up clinicians’ time by ensuring all MS teams have a sufficient number of admin staff to carry out non-clinical duties. Again, that would reduce the burden on doctors and specialist nurses.

Regarding the way forward and positive action, I would be extremely grateful if the Minister would meet MS and neurological charities, including the MS Society and the Neurological Alliance, to discuss establishing what I would call a “neuro-taskforce” to bring together relevant departments, health and social care bodies, professional bodies, people affected by neurological conditions and the voluntary sector from all four nations of the UK. That should cover all areas of health and care, including rehabilitation, mental health, and access to treatments. I would like the Minister to see this as a challenge. It would be a good way forward. It is a way to improve the conditions of people with neurological conditions. It is long overdue, and I hope the Minister will accept this proposal.

--- Later in debate ---

[Lord Dubs (Lab)]

The task force.

[Lord Kamall (Con)]

The task force, yes—I thank the noble Lord for the prompt.

That is all I will say for now. I apologise if I have not covered all the questions; I will endeavour to write. I will diligently read Hansard and offer to write to noble Lords on those questions I have not answered. I thank the noble Lord, Lord Dubs, for raising this issue and all noble Lords for taking part in the debate and for their questions. It means I have to go back to the department and not only learn more myself but make sure we have some meaningful answers to the questions that noble Lords asked.

Sugar

Lord Dubs Excerpts

Monday 24th January 2022 Lords Chamber

[Lord Kamall (Con)]

I agree with my noble friend: it is really important that we review all the evidence and the different programmes. As she rightly said, the fact is that a number of hospital admissions of young children are quite often because those children have tooth decay that requires serious intervention. We are making sure that we look at all the different measures—what has worked and what has not worked—to put these into an evidence-led approach.

[Lord Dubs (Lab)]

My Lords, the Minister said he was looking at all the evidence. In doing that, I wonder whether he is looking at what happens, for example, in Amsterdam, where there is a very enlightened policy of education—going into schools and dealing with mums before they have even given birth—in order that there is a better understanding of this. Surely we must have as wide a spread and approach as that, and not just deal with taxes, which are important.

[Lord Kamall (Con)]

The noble Lord makes a really important point: it cannot just be about fiscal policy; it has to be across a whole range of different areas, including education and prevention. Indeed, one of the things that the NHS is looking at for the future is making sure that we focus more on prevention rather than cure—not to put cure aside; clearly, we have to deal with people who are ill. At the request of the Government, the Scientific Advisory Committee on Nutrition has undertaken an extensive evaluation of the evidence, looking at all the measures that we could possibly take to reduce sugar consumption.

Hospital Beds and Social Care

Lord Dubs Excerpts

Thursday 6th January 2022 Lords Chamber

Asked by

[Lord Dubs]

To ask Her Majesty’s Government what estimate they have made of the number of people occupying hospital beds because (1) there are not enough places in care homes to accommodate them, or (2) there is insufficient domiciliary social care support.

[The Parliamentary Under-Secretary of State, Department of Health and Social Care (Lord Kamall) (Con)]

Although the number of people continually changes, there are approximately 10,000 people in hospital who do not currently meet the criteria to reside and have not yet been discharged. To drive progress and to support local system arrangements, we have established a national discharge task force to monitor and address the causes of delayed discharges. We have also provided £462.5 million via local authorities over winter to support care providers to increase recruitment and existing care support.

[Lord Dubs (Lab)]

My Lords, I appreciate the Minister’s Answer, but is it not the case that this bed-blocking has been happening for a long time, and that health service hospitals are under enormous pressure because of it? Can he give us some idea of when anything will happen as a result of his proposals? Can he comment on another representation that I have had—that there are empty places in care homes not being used?

[Lord Kamall (Con)]

I begin by wishing the noble Lord and all your Lordships a happy new year. We have started the national discharge task force, with membership from local government, the NHS and national government, and we have looked at the different pathways. There are four pathways: one is direct discharge, one is interim discharge, and one is for those who need a bit more support. But then sometimes individual cases are quite different; sometimes a place is offered, but the family may not be happy, so we have to find other ways. One thing that the national discharge task force has been doing is to look for spaces, wherever they may be, across the health and social care system to see whether they would be suitable for interim—but we are looking at all sorts of solutions in partnership with local authorities.

Adult Social Care

Lord Dubs Excerpts

Thursday 2nd December 2021 Lords Chamber

[Lord Kamall (Con)]

I thank the noble Baroness for raising this issue. We want to ensure that people can live in their own home for longer. We have committed a sum of money and been quite clear that practical changes can be made, such as installing stairlifts, level-access showers, wet rooms, sensors, et cetera. New technology is constantly being developed to meet people’s needs in their own home. To this end, we have committed a further £573 million per year to the disabled facilities grant, from 2022-23 to 2024-25. We are also talking to local authorities and others, looking at whether we need to increase the subsidy amount per adaptation and reconsider funding allocation to better align with local needs, as well as funding a new service to enable minor repairs and changes to people’s homes. We need to know what needs to be done, and local authorities and others can come back to us on the adaptations that they need and the best way to achieve them. We must look at best practice to make sure that, as technology develops, people can stay in their own home for longer.

[Lord Dubs (Lab)]

My Lords, I declare an interest; my daughter-in-law is a full-time unpaid carer. First, the report says that unpaid carers’ money will go up to £69.70 a week. That is fine if you also have a job, but quite a few unpaid carers have given up their jobs to be unpaid carers, so that is all that they have got, other than the benefit that the person they are caring for may get. That is a pretty tough situation. Secondly, unpaid carers get very few breaks—some get no breaks at all. We must devise a way of looking after the 10 million or 11 million people who keep everything going. Although there are aspirations in this document, I would like to see them translated into something absolutely practical, so that I can go to an unpaid carer and say, “You’re full time, and something will happen to help you and take off the pressure.” It is a lonely business working full time, on virtually no money, looking after somebody. If the paid carers who come in the mornings or evenings do not turn up, it is the unpaid carers who keep things going. I hope that the Minister will pay attention to that. There is a whole agenda there which many of us will be pushing very hard on.

[Lord Kamall (Con)]

I know that the noble Lord has been a champion in this area. We have been quite clear that, as we go forward, a number of issues have to be understood. For example, you cannot say that all unpaid carers are the same. They all have different needs: some can work and some cannot work; some can spend a couple of hours working and share their care duties with others; there are sole carers; some are elderly and some are younger. We want all the different partners to come together to discuss individual needs—including respite for carers, to rest and recharge—and to look at their financial situations. We have laid out that those who are not working may be eligible for other benefits on top of the care allowance that they get. We are exploring this. It is a process of discovery and we want to ensure that it works. We have therefore set out the vision and the three-year commitment.

Health: Type 2 Diabetes

Lord Dubs Excerpts

Tuesday 12th October 2021 Lords Chamber

[Lord Dubs (Lab)]

My Lords, given the clear links between obesity and type 2 diabetes, does the Minister agree that more can be done to tackle obesity among children and young people? May I commend to him some of the practices being followed in Amsterdam, where this has really been tackled in a holistic manner? Could we not do likewise?

[Lord Kamall (Con)]

I hope the noble Lord will forgive me, but I am not yet aware of the practices in Amsterdam. I would very much like to look into those and learn more. We can learn. It is really important that we learn from best practice around the world, and I would very much welcome it if he could write to me with some details.

NHS Update

Lord Dubs Excerpts

Thursday 22nd July 2021 Lords Chamber

[Lord Bethell (Con) [V]]

My Lords, my noble friend hits the nail on the head. Not only is getting vaccinated and wearing a mask in the right settings a sign of support for NHS staff, it is a sign of support for the whole of society. We depend on each other during this pandemic. When someone catches the disease asymptomatically and spreads it to someone else, they hurt all of us. We all have to be careful to take our tests when we are going into a position of risk, to wear our masks when we are close together and, of course, now that the vaccine is available to all over 18 year-olds, to ensure that all the people we can persuade have taken two jabs.

[Lord Dubs (Lab) [V]]

My Lords, the Minister has on more than one occasion in the last few minutes been asked about the position of care workers. They have been totally left out of the pay settlement. They are working on extremely low wages. Does the Minister not agree that something must be done to help care workers, whether in domiciliary care or in care homes, to have a decent wage and not be treated as the country cousins in this whole thing?

[Lord Bethell (Con) [V]]

The noble Lord is right: we are concerned about the pay, conditions, career prospects and retention of care workers. I have spoken about this in detail in debates on social care, and I share the sentiments of the noble Lord. When we come to social care reform, the correct provisions for social care workers will form an intrinsic part of those reforms. I do not wish to be obtuse, but this is about the NHS. The NHS is a direct employment body, whereas social care has a different employment system and is therefore not covered by this particular settlement.

Social Care and the Role of Carers

Lord Dubs Excerpts

Thursday 24th June 2021 Lords Chamber

[Lord Dubs (Lab) [V]]

My Lords, I should first declare an interest, in that my son has MS and his wife is his full-time carer, although my wife and I have also helped out at intervals. I thank the noble Baroness, Lady Jolly, for the clear way in which she set out the argument.

The crisis in social care existed before Covid and will exist long after Covid unless we take urgent action. This is no time to tinker at the edges; we have to deal with it fundamentally. My noble friend Lord Rooker gave good examples of how to fund social care. The Government could take those to heart; they would probably work. We have heard successive promises from the Government. The usual argument for delay is that they cannot do anything because of Covid. It is time that these promises stopped and the Government got on with it.

We have all heard how, in the residential and domiciliary social care sector, there is low pay, poor status and desperate staff shortages. Then we have the unpaid carers: I do not know how many there are, but estimates vary between 4 million and 13 million people. I have also seen an estimate that they are worth £100 billion a year, given the contributions that they make. Besides that, the actual cost of social care, large as it is, has to be seen in proportion. Unpaid carers have often given up their jobs and work long hours. They are desperate for respite care. A week’s respite care for a full-time unpaid carer is worth its weight in gold. It can change her—it is usually a woman—attitude to life, give her a lease of energy and enable her to go on doing the difficult job she is doing. We have to be reconciled to the fact that demand for social care is going to increase, partly because we are living longer and partly because of dementia and other illnesses. We need to prepare for an increase, not just try to cope with the present demand.

If run effectively, social care would actually save the National Health Service money by reducing pressure on hospital beds. I wonder how many people are occupying a hospital bed because there is not the care and support in the local community. I do not blame local authorities for that; they do a fantastic job and a pretty difficult one. But I will say that the forms one has to fill in to apply for social care are formidable. They still run to pages and pages; I think one needs two PhDs to fill them in. They are pretty difficult for people, but there it is.

We also need better data and statistics on the whole social care sector if we are to make sensible decisions about the future. I do not believe those exist. Sometimes local authorities get together to share their statistics, but I think the Minister will confirm that we could do with better data and statistics. Finally, I believe that we need a national care service, parallel to the National Health Service and introduced with all the imagination shown by the 1945 Labour Government when they introduced it.

Covid-19: Care Homes

Lord Dubs Excerpts

Thursday 17th June 2021 Lords Chamber

[Lord Bethell (Con)]

My Lords, I am grateful for the tone of the question, but its assumption is, I am afraid, quite wrong. Before April 2020, there was very little evidence and no scientific consensus whatever that asymptomatic transmission posed any risk. For example, the World Health Organization said on 2 April:

“to date, there has been no documented asymptomatic transmission.”

My noble friend may remember that differently. They were very difficult times, and we made decisions on very limited information. We made the best decisions we could have done under the circumstances.

[Lord Dubs (Lab) [V]]

My Lords, as late as March last year there was clear evidence coming from Italy about people dying in nursing and care homes there. Surely if we had been half-awake we would have realised that what was happening in Italy was a solemn warning to us, and we should have acted accordingly. Why did we not do so?

Carers: Support

Lord Dubs Excerpts

Thursday 10th June 2021 Lords Chamber

[Lord Bethell (Con)]

The noble Lord puts it very well. Breaks are key. Some 6.5 million carers work flat out throughout the year. It makes all the difference to them if they can have moments of respite when they can lift their heads, conduct their usual tasks and get a little mental clarity. We are very focused on this issue, but I am grateful to the noble Lord for raising it.

[Lord Dubs (Lab) [V]]

My Lords, I also join colleagues in paying tribute to the millions of unpaid carers. Even before the pandemic, they were keeping the whole system going. The Minister has paid tribute to their need for respite care. Can this be translated into something tangible? How many weeks respite care can an unpaid carer have? I know unpaid carers who are desperate to have just a small break from their 24/7 commitment and work. How much time should this be? Furthermore, local authorities are in desperate financial difficulties. Surely, there should be some help for them so that they can provide residential respite care and give unpaid carers the chance to continue.

[Lord Bethell (Con)]

My Lords, I cannot provide a direct answer to the noble Lord’s reasonably broad question, which illustrates the very wide range of care undertaken by Britain’s unpaid carers. As the noble Lord rightly says, some are working 24/7, almost without respite, in incredibly demanding and challenging circumstances, others are dropping in to see a neighbour for an hour or two a day, and there are many permutations in between. It is really important to have local provision so that there is tailor-made support by people who are close and in the community. I am afraid there are not the kind of blanket measures that the noble Lord seeks, which is why we work through charities and local authorities to provide the support that people need.

Covid-19 Update

Lord Dubs Excerpts

Thursday 4th March 2021 Lords Chamber

[Lord Bethell (Con)]

My Lords, I completely acknowledge the concerns of my noble friends Lord Dobbs and Lord Cormack about nosocomial infection. Undoubtedly, infections caught onsite in Britain last year and this year, and in every epidemic, are not only among the saddest forms of contagion but among the most dangerous. I want to reassure both my noble friends that we are absolutely focused on this point. It is, though, too early to make a call on professional mandatory vaccination. We have got through only the first 20 million people in the highest-risk and, therefore, the oldest age groups, and we have not moved through all the other age groups. The Cabinet Office is looking at this matter and has a review process in place. When that process has coughed up its findings, we will be in a position to debate the matter, and I look forward to that in due course.

[Lord Dubs (Lab) [V]]

My Lords, does the Minister agree that the success of the NHS vaccination programme is a tribute to the efficiency and success of the public sector, in contrast to some of the private organisations involved in other aspects of dealing with the pandemic? I want to put a specific question to the Minister. He used the phrase, “Until we are through this pandemic”. Would it not be more sensible to say that we may never be fully through this pandemic, so our planning must be based on the fact that we will have to continue with the vaccination programme as new mutations develop for many years to come? Would it not be better to look that far ahead?

[Lord Bethell (Con)]

My Lords, I disagree completely with the noble Lord’s first point. The vaccine would not have happened without AstraZeneca and the other private companies that have produced, manufactured and delivered it, so I do not know where the public sector would have got its vaccines from. I completely reject that point.

I agree with his second point. I should not have said, “When we are through this pandemic” because we are going to live with its consequences for many years to come, and if it is not this pandemic, there may be others in the future. We have all, I think, taken on board the fact that in the modern world, there is a new, 21st century cost for the kind of global lifestyle that we have got used to, and that is the international spread of viruses. We can, I think, win the battle, but we will have to adapt. Learning how to do that is the challenge of this year.