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.