Health: Neurological Conditions

Baroness Gardner of Parkes Excerpts

Thursday 8th December 2011 Lords Chamber

[Baroness Gardner of Parkes]

My Lords, I should declare my interest because a member of my family has multiple sclerosis.

My speech is to be a bread and butter one. As I am an Australian speaker, your Lordships will appreciate that my comments will be upside down, the butter first and then the bread. The butter is the special part: the noble Lord, Lord Walton of Detchant, who is such an expert on neurological matters, has authorised me to place on record part of the contribution that he would have made, but regrettably he is not able to take part in this debate.

This is what the noble Lord has asked me to say. This Government should be congratulated on their recent Statement on support for translation research—that is, translating results of basic scientific research into practical patient care. For example, discoveries in molecular biology and genomic medicine are beginning to identify treatment for some rare but serious neurological diseases such as muscular dystrophy. Many other inherited diseases are likely to benefit. There is a problem. The drugs discovered in this research will be very expensive and commercial benefits will be limited because the number of patients is not large. The Government will have to take note, as indeed they are doing, of the so-called orphan drugs. It is also important to note there have been massive developments in neuro-rehabilitation in diseases such as multiple sclerosis, Parkinson’s, epilepsy and Alzheimer’s. All can have their effect increasingly modified, to the patient's benefit, by drugs and physical as well as psychological interventions; and in this respect it is crucial that the Government should support the roles of specialised nurses, physiotherapists, occupational therapists and other healthcare professionals.

Now for the basic bread—my remarks. Neurological conditions are common in the UK. The majority of them are long term, which inevitably puts anyone diagnosed with such a condition in regular contact with the National Health Service and social services.

My eldest daughter has had MS for over 30 years and she is supported by a wide range of services available at present. Sarah has attended more than 60 outpatient clinics at the National Hospital for Neurology and Neurosurgery in Queen Square in those 30 years. However, she is conscious that, expert as her consultant is, she sees his team only every six months. It is help with the day-to-day living that people with long-term neurological conditions need. By making telephone contact with her MS nurse, she is able to access help from the allied health professionals within the hospital and within the community.

Sarah receives community neuro-physiotherapy for a short six-week burst every few years. This is to help her to maintain her daily exercise routine and to learn new exercises to tackle new symptoms as they arrive. Occupational therapists help those with disabilities to learn how to adapt to their own specific everyday life. The occupational therapist helps Sarah with gadgets and key life skills to make everyday living easier. The podiatrist has made specially fitting insoles and toe props for her shoes so that she can continue to move around to the best of her ability to some degree. The dietician has tailored her eating patterns to assist with her energy levels. Sarah is always clear about the benefits of the support she receives. She says that their intervention has always made just managing all right into managing better.

The specialist nurse has an essential role to play too. I have always emphasised the value of specialist nurses in any field and never more so than in neurological conditions. Sarah is a patron of the MS Trust. There are real fears that specialist nurse posts are not being filled when they become vacant. The MS Trust, which provides specialist education and training for MS nurses and other professionals working with MS, keeps a log of all MS nurses in post and is extremely concerned that their numbers are reducing. There are not enough MS nurses in post to cover the 100,000 people with this condition. I would speculate that the same could be said for other specialist nurses across the NHS. Just this week, Macmillan and the Skin Association have told me of the loss of specialist nurse posts dealing with those conditions. Specialist nurses may cost more to train but they repay the NHS in huge benefits to patients and save the NHS money in the long term.

It is not just the NHS that helps people with long-term neurological conditions. Social services in local authorities provide adaptations, carers and help around the home so that the individual can continue to live within their community. The present pressures on local authority budgets are causing concern that they may result in cutbacks to services and, if so, this could have a very adverse effect on the lives of those dependent on those services.

The Department for Work and Pensions through Jobcentre Plus has a range of benefits that individuals can apply for. Many of these are under review as part of recent reforms. Disabled people are naturally concerned about the outcome of the Welfare Reform Bill and the detail is still awaited.

My daughter received help with travel costs, via Access to Work, from 1998 to 2007. This paid for a taxi to take her to and from work each day because she was unable to use any form of public transport at that time. Now that buses have been fitted with ramps, she can access these in her wheelchair scooter but she is still unable to sit for hours on buses, and distances travelled are therefore limited. However, she almost personally won that battle last year when London Buses decided that it could not allow buses to take electric buggies any more. She took up the issue with Transport for London and a decision has now been made on the exact weight of buggy that can be allowed on a bus without danger of breaking the ramp. The system seems to be working happily again. It was important to establish that before the Olympics and the Paralympics, when many people will be using that form of transport.

The Access to Work grant allowed her to stay in work, earning a wage and paying the requisite taxes, for a good 10 years longer than she would have been able to work without that support. The grant was a small amount compared to what she paid in tax and national insurance. It makes sense for the Government to ensure that this grant continues to be widely available.

If you are a person with a long-term neurological condition, it is vital that you have every opportunity to remain as well as you can. That will allow you to play your part in society. At the Neurological Alliance’s annual parliamentary reception a few years ago, the main speaker was Tom Isaacs, who has Parkinson’s. He was talking about long-term neurological conditions in general, and said that society and the NHS do not encourage people with long-term neurological conditions to become informed and to learn as much as possible about their condition. There are real worries that the services these people need to maintain their quality of life to the best of their ability may be lost in the changes.

I read that the Russians are developing a way of reproducing the myelin sheath, which is destroyed by multiple sclerosis. All such developments are a long way off, but a lot of research is being done. One thing we must accept is the indomitable spirit of people with these conditions, their unbelievably positive thinking and optimism. That is something we accept.

I also want to pay tribute to the number of voluntary organisations and charities that give their support to people with neurological conditions. There are too many to mention here and I would hate to miss any from the list, but their provision of information leaflets, practical advice, comfort in distress, and concerted efforts to make the conditions more widely known and understood is outstanding. We must also not forget the families and friends who help to care for individuals.

I congratulate the noble Lord, Lord Dubs, on bringing this subject to us, and this debate has been a good opportunity to place all these matters on record. I know that we have a caring Minister in the noble Earl, Lord Howe, and I am glad that he has found the time to be here for this debate, in spite of all the pressure he is under with his responsibility for the new health legislation.