Health: Neurological Conditions

Baroness Masham of Ilton Excerpts

Thursday 8th December 2011 Lords Chamber

[Baroness Masham of Ilton]

My Lords, I thank the noble Lord, Lord Dubs, for having secured this very important debate.

In 2007, the Department of Health issued a national framework for NHS continuing healthcare to try to improve the consistency of approach taken by local NHS bodies by providing a common framework for decision-making and the resolution of disputes. The national framework explains that the services provided as part of that package should be tailored to meet the specific health and social care needs of the individual and should be seen in the wider context of best practice and service development for each client group. Eligibility for NHS continuing healthcare is not based on having a specific medical condition and places no limits on the settings in which the package of support can be offered or on the type of service delivery. Why has this not proved to be effective?

I was pleased to read yesterday in the Times about the pledge to enhance quality of life for people with long-term conditions and a drive to ensure that people have a positive experience when using the health service. Has the 60-step plan been put out to allay fears about the Health and Social Care Bill, which is leading to so many changes and insecurities? Some people feel that localism could mean a postcode lottery. Many people with long-term neurological conditions depend on the correct drugs for their needs. There are only a few treatments for people with MS, so they should be sure of having access to them. The correct epilepsy drugs are also vital.

Care for patients with long-term neurological conditions has traditionally been based in district general hospitals or out-patient clinics of regional neuroscience centres. It is generally consultant-delivered, with, more recently, specialist nurse input. Specialist nurses make all the difference. They teach patients and carers and they are the consultant’s right hand. They link primary and secondary care. A shortage of specialists and a lack of multidisciplinary working have resulted in patchy support for these patients; for example, Epilepsy Action reported that in England in 2008, 50 per cent of trusts did not have a consultant with special expertise or interest in epilepsy and 60 per cent of trusts had no epilepsy nurse.

The Sentinel audit of epilepsy deaths noted that a number of those who died had not seen a neurologist in the preceding year despite still having seizures. Parkinson’s UK showed that despite NICE guidance, 15 per cent of patients have never been seen in hospital by a specialist; 30 per cent diagnosed within the last year have never seen a PD nurse; the majority have not received multidisciplinary team assessment or treatment; and a third of patients admitted to hospital did not feel that the staff knew anything about Parkinson’s disease. Patients with neurological conditions need the correct medication, which needs monitoring. They need to be under a specialist for changes in their condition and to be kept as well as possible. The effectiveness of their drugs needs to be recorded.

Most patients with straightforward stable neurological disorders do not need continuing care at a hospital. However, they need the reassurance that they are being cared for within a network of care that encourages shared best practice, good communication and easy access to the service when and where necessary. With so much change, now is the time for patient involvement and a strong patient voice. If conditions such as strokes can be prevented, so much the better. It would be interesting to hear from the Minister how much better the outcomes have been since the introduction of statins.

I have a few personal experiences in the neurological field. I have a niece who has epilepsy. When she lived in London and was looked after by one of the London hospitals, she had numerous seizures. One day during a seizure when she had collapsed on the pavement, someone picked up her handbag and took it to a police station, leaving her to find that the bag had gone when she came to. After that, we gave her an identification bracelet. Whenever she had a check-up, she was seen by a different junior doctor. There was no continuity of care. On one occasion, she had a seizure in my car. But I am pleased to say that she is now happily married with a young boy and is looked after by a specialist unit.

My sister-in-law’s brother-in-law developed motor neurone disease. I agree with the MND Association. Because of the rapid progression and wide range of symptoms, people with MND have complex and demanding care and support requirements. They need what they need straightaway. Currently, there is no national guidance for MND. The MND Association is calling for NICE to produce a clinical guideline and quality standard for MND. David was a strong man who deteriorated very fast and is now dead.

I am someone with a spinal injury. Damage to the spinal cord leaves a person, if the lesion is complete, without feeling or movement from that area down. The treatment can cover neurology with such complications as autonomic dysreflexia, which involves blood pressure; urology, because the bladder and bowels are paralysed; and orthopaedics. So many complications can arise—such as serious pressure sores, mentioned by my noble friend—that treatment in a spinal unit with staff specially trained in spinal injury is essential.

When I left hospital and lived in Yorkshire, I found that without a voluntary association to support people with spinal injuries and to educate the public, there was a big gap. With some others, we founded the Spinal Injuries Association. We support members with information and advice. We have purpose-built headquarters and, now, a library and a helpline. We have peer support for newly paralysed people. We are involved in a training scheme for helpers with Stoke Mandeville spinal unit and Buckingham University. We could not do this without our valuable fundraisers.

Many neurological conditions need voluntary organisations to help members and to speak out on their behalf. That is essential. There is ongoing need for research into these varied and complicated conditions. There is also a need for new and effective medication. I should like to add my plea to the Minister to look into the wheelchair service for all who need it, including disabled children. This needs urgent rehabilitation.