NHS: Death at Home

Lord Dubs Excerpts

Thursday 8th November 2012 Lords Chamber

[Lord Dubs]

I join in congratulating my noble friend Lord Warner on having achieved this debate.

As a society we are not normally good at talking about death and in some areas it is still almost a taboo subject, so it is even more welcome that we can talk about it frankly and openly. We are talking about choice. There are many people who contribute to end-of-life care and they should be acknowledged—doctors, nurses, health care assistants, social workers and of course the family of the person who is nearing the end of his or her life.

I understand that there is controversy about the Liverpool care pathway. I do not know that much about it but I disagree with the noble Baroness. I do not think that it is such a reprehensible approach and there is a lot to be said for it but perhaps that needs to be debated on another occasion.

Of course it is important to enable more patients to die at home if that is their choice. We know that most people still die in hospital. The figures I have are 51% in hospital, 21% at home, 22% in a care home and 6% in a hospice. Although in commenting on the quality of the care, 92% said that a hospice provides excellent care, or their relatives said that. So when asking people about whether they would choose the place of death, only 44% expressed a preference but of these the vast majority said that they wanted to die at home.

My contention is that it is a matter not just of choice but of informed choice. It is very easy to say that home is the only place but I do not believe that it is quite like that. It may not always be practical to die at home and the hospital or residential hospice may provide the best care for people with complex needs and for managing pain. People need to be better informed about the reality of dying at home. If there is a large supportive family that is one thing but suppose there is not; suppose the person does not have a family to support them. How can they then die at home? It is not practical. It is understandable that, where there is a family, people want to be surrounded by the family as they reach death and normally that will be all right but that also puts a heavy burden of caring on the family, which may not be in the best position to do that. Although the onus must be on choice to enable people to die at home, I am just uttering a word of caution that it may not be the most appropriate decision for them. Indeed, if one is getting near death, at the outset, one may say, “I want to die at home”, but as one’s condition deteriorates, that may not, in fact, be the choice one wants to make, so there always needs to be the opportunity for people to change their minds. What is important is that all healthcare professionals should inform the patient of all care and treatment options so that the patient knows the consequences of any decision they make.

As most people die in hospital, most complaints about hospitals relate to end-of-life care. That is understandable, but that may not be the only matter for consideration. Funding is a problem, and one does not want a situation where people choose an option because it is free. Hospitals are free, I think hospices are free, but at home, financial support for care may be needs-tested and means-tested. One does not want a situation where people choose on the grounds of finance not on where they will be happiest and more at peace with themselves.

Dying at home, in a hospital or in a hospice should be an informed choice, and I would like the NHS Constitution to reflect that, but I add, as my noble friend Lord Warner did, that I feel that assisted dying should also be one of the informed choices. I hope that palliative care will not always be seen as an alternative to assisted dying but rather as complementary to it. In that way, patients would have a happier set of choices and a better path on the road to death.

NHS: Walk-in Centres

Lord Dubs Excerpts

Thursday 11th October 2012 Lords Chamber

[Earl Howe]

My Lords, the noble Lord raises an important point. I am aware that in certain parts of the country there is considerable concern about the length of time that patients sometimes need to wait for a GP appointment. However, that is not the case all over the country. We expect GP practices to configure themselves so as to ensure that the waiting time is kept to a minimum. It is an area on which we are working closely with the profession to resolve.

[Lord Dubs]

My Lords, does the Minister agree that it would be a good idea if more GP practices were open on Saturdays?

[Earl Howe]

In many areas that is an entirely valid observation. Commissioners are saying to GP practices that they expect them to respond to the needs of their local patient populations. If Saturday opening makes sense in that context, they should seriously consider it.

Health and Social Care Bill

Lord Dubs Excerpts

Monday 19th March 2012 Lords Chamber

[Lord Dubs]

My Lords, I shall speak very briefly as the House wants to move to a vote. I support this amendment and would like to pay a tribute to my noble friend Lady Thornton for the work that she and her team have put into this. Without the backing of a government department, they have performed heroically and very effectively.

I want to give only one personal reminiscence. The National Health Service started on 5 July 1948. I was a child in hospital on that today; I was quite ill in Stockport Royal Infirmary. The consultant and his team came; in those days one either had to stand to attention or lie to attention when the consultant came with the matron and the team of junior doctors. Momentarily, he stopped at the foot of my bed and I said, “Are we going to celebrate? Are we having a party?”. He asked, “What are you talking about”? I was the only child in the ward, so it was cheeky of me but I said, “Well, the hospital is ours today—isn’t it wonderful?”. He walked on without saying anything, but it was a momentous day and I never thought that, 64 years later, I would be here at Westminster and lamenting what has happened to our beloved National Health Service. Let me conclude by quoting Nye Bevan, who said,

“The NHS will last as long as there are folk … with the faith to fight for it”.

[Baroness Finlay of Llandaff]

My Lords, it is with a very heavy heart that I feel I must stand up and record that many of the voices outside, who are very scared about this Bill and what it means, are people who are of no particular political persuasion. Yet they are worried about the problem of lack of financial transparency, about the number of private healthcare companies incorporated in offshore jurisdictions—which they see may evade taxes of various types—and about the commissioning process. They are also concerned that the use of public money in the healthcare system will slowly be obscured like a great iceberg wrapped in fog. They will work to deliver whatever is needed for the patients in front of them. The vast majority of them stand to gain nothing by this Bill passing, but to gain nothing either if it does not pass. They want to improve the standards for their patients, and indeed they argue for change.

The noble Earl has worked tirelessly and has confidence across the whole House. Everybody, however much they have been concerned about this Bill, owes him an enormous debt of gratitude for the way that he has listened to every single one of us, at all times of the day and night, and weekends and so on. But we should not let this Bill pass without recognising the enormous concerns there are outside this House among those who will be delivering healthcare, now and into the future, in whatever form it takes.

Health: Neurological Conditions

Lord Dubs Excerpts

Thursday 8th December 2011 Lords Chamber

Moved By

[Lord Dubs]

To move that this House takes note of the support available for persons with neurological conditions.

[Lord Dubs]

My Lords, I welcome this opportunity to initiate a debate on neurological conditions. I declare an interest at the outset because a member of my family has had MS for about 10 or 12 years, so I have some fairly close and direct experience of what the condition means.

To start with, I shall say a little about disability in general, although it will be about elements of disability that affect people with neurological conditions, and then I shall talk about neurological conditions themselves. Disability affects many people with neurological conditions. One of the main things that people discover is how costly it is to have a disability. There are all sorts of routines in life that most of us carry out very easily but that simply cost more for a person who is handicapped and cannot get about so easily. I am concerned that the Government’s welfare reform agenda properly supports all people with MS to live a full independent life, particularly with the move from disability living allowance to the personal independence payment, but I am not trying to repeat the substance of legislation that is currently going through.

People with disabilities, particularly those in wheelchairs, will often realise that being disabled is very costly. Aids and adaptations can be expensive, and some of the firms supplying them adopt pretty aggressive selling practices even though some of the people they are dealing with are vulnerable. I shall give your Lordships an example. I was talking to a person with MS who said that she wanted an adaptation for her home—I think it was a hoist of sorts. The company came to her home and wanted £2,000. She said that she could not possibly afford that. They phoned repeatedly, and gradually the price went down to £600. There is something very curious when a person with a disability can be hassled in this way over an essential adaptation, when clearly the mark-up must have been enormous if the firm was willing to sell at the lower price.

We see many areas of life where high technology comes in, yet in the disability world modern technological materials are pretty expensive. A lightweight wheelchair of the sort that one pushes is usually so frail that one cannot push it very far, whereas more robust wheelchairs are heavy and hard for people to lift into a car boot. I wish that the technological world would just get stuck into this area; a lot of people would benefit.

I turn to some specific neurological conditions. Every person is different and there is no set pattern for people with these conditions. The conditions are usually progressive, so the patients’ needs must be met in differing ways. What neurological conditions have in common is that they are—I hate this word; I am looking for a better one—unfashionable. They do not have a high enough profile compared with other conditions like breast cancer or HIV/AIDS. I congratulate the organisations backing those; they have had high-profile success. Because people with MS and other neurological conditions have a low profile, though, public awareness is not really there. That means that the conditions inevitably attract less attention from decision-makers and command fewer resources.

I shall give an example from local government. Many people with neurological conditions, and other disabled people, have difficulty gaining access to public buildings. I know that conversions of old buildings can be costly, but in the mean time this can affect people’s basic rights. I appreciate that this is mostly a local authority matter, but I thought that I would just flag it up in passing.

On a national scale, there is currently no national strategy for neurology. This means that there is no proper leadership from the top. That has resulted in some of the very effective neurological charities struggling to make their voices heard in order to get a good service for people with such conditions, regardless of where they live. We have, or had, a National Service Framework for Long-term Conditions. However, when this was introduced the implementation and monitoring were rather poor, which resulted in a lack of understanding of what its real effect has been. The framework was introduced in 2005 but many concerns remain, such as variation in service provision, poor co-ordination of care, poor-quality care and poor information. The framework identified key areas of concern, including diagnosis, access to treatments, information for patients and quality of care and service, and aimed to improve them by 2015. However, I understand that the framework is now no longer the policy of this Government, who intend to have a general long-term conditions strategy. However, frankly, with no leadership, there is real concern that neurology will once again be an unheard voice. There must also be a concern that this will result in a deterioration of care for people with neurological conditions.

I turn briefly to commissioning. I do not want to repeat arguments and debates in which the Minister has taken part on the Health and Social Care Bill, but I want to address commissioning because it affects neurology in a very important way. Certainly, the Minister will have had representations from the Neurological Alliance, as I have had, which represents 40 brain and spinal charities, representing some 8 million people with neurological conditions. The problem concerns how the commissioning of services for people with MS and other neurological conditions will take place under the new CCGs. There is a sense that there is a strategic gap between CCGs and the national Commissioning Board. CCGs, as at present devised, will cover relatively small populations and it will be difficult for them to be cost-effective in commissioning services for less common conditions. I have mentioned that there is a large number of people with neurological illnesses but for each condition there are often, mercifully, not so many sufferers, so the services will involve specialised support for a relatively small number of patients. The national Commissioning Board, which might have an oversight, will be too far removed from the localities. I hope that something can be done to ensure that the CCGs, perhaps working collaboratively with oversight, can make up for the lack of a strategic health authority, which did the job pretty well. I also think that there should be an advisory group within the NHS Commissioning Board on the subject of neurological conditions.

I understand that the National Audit Office is to report shortly on the provision of services for progressive neurological conditions. I will not speculate about what it may contain but it may be very helpful in the scheme of things. When a person is told that they have MS, it is a very traumatic experience for the individual. Often they are simply told to go home and that little can be done. A person with MS—not someone in my family—said:

“I mentioned the lack of support services when people are first diagnosed with MS. This was based solely on my experience where the neurologist told me there was nothing they could do for me but advise me to avoid hot baths and red meat. I was given no leaflets or other information and no support telephone numbers”.

That is pretty serious. The situation may have improved recently but many GPs are not that aware of this condition and it is hard to get information and advice.

The Minister will be aware that one of the key difficulties is the lack of MS nurses or neurological nurses. I wish to quote patients’ comments in this regard. One says:

“My MS Nurse is amazing!! She is great and helps with anything, if it weren't for her I do not know what would be happening to me”.

Another one states:

“My local MS nurse has been an absolute godsend, I could not imagine coping without her”.

That is fine, but many persons with MS do have to cope without an MS nurse. Frankly, if somebody with MS were to move their home and asked my advice, I would advise them not to move until they had checked the availability of MS nurses in the area to which they are going. In other words, they should not go to an area where there is no MS nursing support; it is just too difficult for these people and their life will be much easier if they move somewhere else. That is a real example of a postcode lottery.

I appreciate that some MS nurses are provided by a local authority but I understand that the majority are employed by acute trusts. What will happen under the new commissioning arrangements—assuming that the Bill goes through in its present form—to ensure that the number of MS nurses does not fall under the new scheme of things? I am not sure whether in present financial circumstances it is better to have neurological nurses or more specific MS nurses, plus specific nurses for other neurological conditions. However, the need for some element of specialism is very clear. MS nurses provide support for the whole range of a person’s needs; in fact, they provide a holistic approach to the condition and, of course, they refer individuals to where they can get appropriate further help. Therefore, it is important that there are enough neurologists for patients to be referred to. Some MS nurses have told me that they provide advice to patients but, if there is no neurologist to whom they can refer the patients, that is pretty difficult. Therefore, there is a real need for MS nurses. They do refer patients for physiotherapy. I am told that of all the things to help people with MS, physiotherapy actually does help. I speak from experience in my family. However, existing resources for physiotherapy are limited and many patients with MS do not have access to physiotherapy at all.

There are quite a lot of disease-modifying drugs that manage the symptoms. There have been many discussions about the cost of these, in which NICE has been engaged. However, the majority of MS patients apparently have very little of this sort of treatment. A well known drug is Tysabri, which has been recommended by NICE. It has a positive NICE appraisal. Some other drugs are made available; I think that beta interferon is one of them. I appreciate that they are costly but there needs to be a more systematic approach to the sort of drugs that should be made available for people with MS, and an assessment of their efficacy for the condition. One neurologist is alleged to have said—I did not hear him say this—that 90 per cent of his patients take cannabis. He feels that he cannot criticise that. It may not be therapeutic but, if it makes the patient feel better, one has to be very careful before one gets too critical of that. I suppose that in the long term the main hope is stem cells. Their use to treat this condition is a long way off but I hope that the Government will put maximum effort into encouraging stem cell research because that represents more hope for patients than anything else.

We have a rather disappointing record as regards comparisons with European countries. In a study conducted in 2009 on access to treatments, Britain was ranked 25th out of 27 countries. Another study in 2010 assessed provision for specific conditions, including MS, and the United Kingdom ranked 13th out of 14. International comparisons matter although it is difficult to establish whether they are evenly based.

I wish to mention a couple of other neurological conditions. One is trigeminal neuralgia—I hope that I have pronounced that correctly—5 per cent of people with MS also have TN. It is frequently misdiagnosed. This is understandable as only about 7,000 people are alleged to have the condition. However, it causes incredible pain and even after surgery the pain may return within a few years.

A couple of days ago I was talking to a specialist in epilepsy. He was very concerned that there should be quick and efficient diagnosis of children. If they can be diagnosed quickly when they are young, their lives can be saved or their quality of life can be improved. At present, 1,000 people a year die of epilepsy—40 per cent of these deaths are avoidable—and 59 per cent of childhood deaths are potentially avoidable. Again, improved access to specialist clinicians, nurses and surgery is the key.

I wish to ask the Minister a few more specific questions in my remaining time. How will he ensure that people with long-term neurological conditions will be supported in order to improve their quality of life, including access to treatment and care? There is an urgent need to have someone accountable for neurology services. Does the Minister agree that appointing a national lead for neurology within his department would help to ensure improvements so that we can catch up with our European counterparts? It has recently been made public that the Government will be developing a long-term conditions strategy. Will the Minister elaborate on that and give us some idea when it might be published? Given the experience of the National Service Framework for Long-term Neurological Conditions and the lack of impact that it ultimately had, what will the Minister do to ensure that neurology is not once again ignored and underrepresented? Finally, does the Minister recognise the need for a neurology strategy as a separate entity from the planned long-term conditions strategy?

If this debate raises awareness of the issue and raises the profile of people suffering from these conditions, it will have achieved something. If the Minister can give me a positive answer to these questions, it will have achieved a great deal more.

--- Later in debate ---

[Lord Dubs]

My Lords, I thank all noble Lords who have contributed to the debate. I was very impressed by the level of commitment, knowledge and professionalism that was shown by everybody who spoke. I have certainly learnt a lot, although I did a lot of homework before the debate began.

I thank the Minister for a very thoughtful reply; I am not saying that I agree with every word of it. I know that he has been extremely busy almost every day of the week, so I am particularly grateful that he found the time to give us his response to the thoughts that were put forward.

It would be wrong to go into things in detail, but I will pick up one issue: that of nursing. There were many important issues, but it seems to me that the common comment on nursing made by almost everybody was the important part that specialist nurses play in helping and supporting people with neurological conditions. Allied to that was the comment that nurses probably save the rest of the health service quite a lot of money. Perhaps I should not enter a new thought into the debate when I am just saying thank you to people, but I make a plea to the Minister to assess whether more nursing support would not actually be beneficial to the health service in financial terms as well as enormously helpful to the very vulnerable people on whose behalf we have been debating today.

Motion agreed.

Health: Multiple Sclerosis

Lord Dubs Excerpts

Tuesday 7th June 2011 Lords Chamber

Asked by

[Lord Dubs]

To ask Her Majesty’s Government how many multiple sclerosis nurses there are in England and Wales, and what proportion of people with multiple sclerosis do not have access to a specialist nurse.

[The Parliamentary Under-Secretary of State, Department of Health (Earl Howe)]

My Lords, the information requested is not collected centrally. In England, it is the responsibility of local health bodies to make decisions on the number of multiple sclerosis nurse posts and for local providers to ensure that they have a workforce skilled to deliver these services.

[Lord Dubs]

Does the Minister agree that the majority of patients suffering from MS do not have access to an MS nurse and that the absence of an MS nurse makes it very hard for patients to live independently? Does he further agree that the absence of an MS nurse puts enormously more pressure on consultants and GPs?

[Earl Howe]

My Lords, the Government recognise the very valuable contribution made by nurse specialists. It remains our view that local providers should have the freedom to determine their own workforce based on clinical need as they assess it. The commissioning consortia that will be in place subject to the passage of the Health and Social Care Bill and led by clinicians will recognise that nurse specialists have an essential role in improving outcomes and experiences for patients. That is part of the key to ensuring that these valuable posts remain in place.

NHS Reform

Lord Dubs Excerpts

Monday 4th April 2011 Lords Chamber

Asked By

[Lord Dubs]

To ask Her Majesty’s Government why they have reorganised primary care trusts with effect from April; and how that relates to the further reorganisation proposed in the Health and Social Care Bill.

[The Parliamentary Under-Secretary of State, Department of Health (Earl Howe)]

My Lords, the NHS operating framework 2011-12 set out that, to retain effective management capacity in all PCTs until their abolition in 2013, subject to parliamentary approval, PCTs should form clusters managed by single executive teams. This clustering arrangement will support PCTs in preparing for and transitioning functions to GP consortia.

[Lord Dubs]

My Lords, does the Minister not agree that too much reorganisation is more than the health service can stand? What on earth is the point of abolishing PCTs and re-establishing them in clusters two years before they are going to be abolished? It makes no sense at all unless the Government are going to change their mind about the main legislation.

[Earl Howe]

My Lords, when we went out to consultation on the White Paper last summer, concerns were raised that the transition could lead to too much disruption and a decline in the quality of services, as well as a loss of accountability, so the department decided to expand the approach to managed consolidation of PCT capacity and establish the clusters nationwide. That has been done already in London and the north-east and will pave the way for the NHS commissioning board to develop its roles. It will maintain accountability and grip during 2011-12 and the subsequent year, once strategic health authorities have been abolished. We are using existing legislative powers and it will help to oversee delivery in the coming two years.

Health: Multiple Sclerosis

Lord Dubs Excerpts

Wednesday 2nd February 2011 Lords Chamber

[Earl Howe]

My noble friend is absolutely right. There are two drugs, Cladribin and Fingolimod, which are oral treatments but they have not yet received licences. The trial results for Fingolimod are promising, but it is premature to say that the treatment will remove the need for the drugs in the risk-sharing scheme. Clearly, oral treatments are likely to have advantages over alternative treatments given by injection or infusion, but some concern has been expressed about possible side-effects and the likely cost to the NHS.

[Lord Dubs]

My Lords, does the Minister agree that many patients who are on those drugs also need the support of MS nurses, of which there are very few? Indeed, in some parts of the country there are none at all. What can be done about that?

[Earl Howe]

In recent years the number of specialist MS nurses has increased—I understand that the number has almost doubled—partly as a result of the risk-sharing scheme introduced in 2002. However, we hear anecdotal reports that the numbers are dwindling, which is a matter of concern. Under the new NHS architecture, which will be characterised by clinically-led commissioning responding to the health needs of the local area, we will see that the workforce planning that will emerge will lead to the training of more of these specialist nurses.

Health: NICE

Lord Dubs Excerpts

Wednesday 14th July 2010 Lords Chamber

[Earl Howe]

My Lords, the noble Baroness makes a very important point about dementia. She will be aware that when the Alzheimer’s drugs were appraised by NICE some years ago, there was disquiet that the role played by carers had not received adequate attention in the appraisal process. It is an issue of great importance to many people, but it is very complex. Given the finite, overall health budget, if we give greater weight to one factor, such as carers or getting people back to work, we automatically, by default, give less weight to others, such as people at the end of their lives. We need to look at this, but it is complex. We shall not let it go, but I cannot give the noble Baroness a definitive answer today.

[Lord Dubs]

My Lords, I wonder whether the Minister can do better than the Prime Minister did in Prime Minister’s Questions earlier today, when he declined to give a guarantee that the 14-day period, within which cancer patients should receive hospital treatment, would be upheld. Can he confirm that the Government will stick to the 14-day period?

[Earl Howe]

My Lords, that target of a 14-day referral period has a definite clinical underpinning. There are certainly no plans to abolish it.

Health: Isle of Man

Lord Dubs Excerpts

Monday 14th June 2010 Lords Chamber

[Earl Howe]

My Lords, I am afraid that I cannot help my noble friend as I have not had access to the papers relating to the previous Administration. However, I can tell him that very cordial discussions and negotiations are proceeding at the moment, and the devolved Administrations will be consulted.

[Lord Dubs]

My Lords, the Minister in an earlier answer referred to the United States as being a parallel, but does he not agree that what we are after is that British tourists who go on holiday to the Isle of Man feel that they are covered at least as well as if they had gone on holiday to France? Does he agree that that is not the case and, unless insurance arrangements change, our people will suffer, as will Isle of Man people? Surely the right thing to do is to keep these reciprocal arrangements going.

[Earl Howe]

My Lords, if a UK resident were to travel to the Isle of Man, as I have said, and were to fall ill and need emergency care, they would receive that care free of charge. That is what the agreement currently covers. It was extended by the previous Government in March and will last until the end of September. We are using that window of opportunity to negotiate with the Isle of Man Government and, as I have said, these discussions at official level are proceeding very cordially.