Health: Neurological Conditions

Baroness Thomas of Winchester Excerpts

Thursday 8th December 2011 Lords Chamber

[Baroness Thomas of Winchester]

My Lords, I, too, am extremely grateful to the noble Lord, Lord Dubs, for introducing the debate and for allowing us to widen it a bit into, for example, the costs of being disabled.

The term “neurological conditions” covers a huge number of conditions, as has already been said. From motor neurone disease to autism, there are hundreds and hundreds. In the family of neuromuscular disorders, of which I know a little, there are also a huge number of conditions, even though they are considered rare or very rare diseases, with a cohort of only about 70,000 people altogether. I shall return to these particular conditions in a moment.

The noble Lord, Lord Dubs, resisted the temptation to rerun some of the debates in Committee on the Welfare Reform Bill about the personal independence payment, which is the replacement for disability living allowance from 2013. However, I shall give into temptation just a little bit, which I hope will be acceptable. Having to save 20 per cent of current expenditure could mean that some people with quite serious, but, say, fluctuating neurological conditions such as MS, which we have heard quite a bit about this afternoon, might not qualify for the award of PIP in the future—I declare an interest in that I receive DLA. This is why it is so important to get the PIP assessment criteria right before it is rolled out.

I am particularly tempted to say something about the Government's intention to take the aids, adaptations and appliances that disabled people use into account when assessing someone's eligibility for PIP, which could mean that the more determined a disabled person is to get out and about, the more they are penalised. We do not want a situation to develop whereby those who use, say, manual wheelchairs will not qualify because they do not get enough points on assessment, but those who use electric wheelchairs do. They may both need as much extra heating in their homes, or help with accessible transport such as taxis. Many of these people will have neurological conditions such as MS or Parkinson's disease. We need real clarification about how the use of aids, adaptations and appliances will be used to assess people who apply for PIP.

I will not say any more about the ramifications of the Welfare Reform Bill at this point, and will instead concentrate on the report just out, put together by my own consultant, Professor Michael Hanna of University College London Hospital’s NHS trust. His report analysed 266 unplanned hospital admissions for 200 patients with a neuromuscular disease across eight NHS trusts. The key finding of the data analysed was that 37 to 41 per cent of all emergency admissions could have been avoided, thus saving the NHS up to £31 million a year.

Neuromuscular conditions are progressive, so it is essential for patients to receive ongoing input from a co-ordinated multidisciplinary team of specialist health professionals to manage changing symptoms, to reduce complications and to provide expert advice on equipment and treatments. Many patients are still unable to access the right medical equipment and specialist physiotherapy, which can keep muscles supple and reduce the risk of falls.

At present, there are just 31 expert care advisers to support the 70,000 people with neuromuscular disease. This is half the number recommended by the Walton report in 2009, which criticised the NHS care of people with the various forms of muscular dystrophy as inadequate. However, the number of expert care advisers has more than doubled since 2008, following campaigning for these key roles by the Muscular Dystrophy Campaign. Having a neuromuscular care adviser in post can actually save the NHS money by, for example, allowing them to take on administrative tasks otherwise done by a consultant or GP, signposting patients to local services and liaising with other service providers. Dr Majumdar, paediatric neuromuscular consultant at Frenchay Hospital in Bristol, estimated that the neuromuscular care adviser there saved over 80 hours of consultant time per Duchenne muscular dystrophy patient over the lifetime of the condition.

The experience of the MDC with neuromuscular care advisers is mirrored by the experience of other groups. We have already heard how important the MS nurses are. The MS Society says that such nurses are a vital source of support, from managing relapses to giving advice on drug treatments, and, as with neuromuscular care advisers, acting as a gateway to other specialist services. As the noble Baroness, Lady Gardner of Parkes, said, 40 MS nurse posts are currently under threat in England, but the MS Society points to the savings that the NHS will make if there are enough such specialist nurses. Specifically, these nurses promote self-management and often prevent long hospital stays.

The same is true about Parkinson's disease nurses. They are an invaluable local source of expert knowledge and can help those who are newly diagnosed come to terms with the diagnosis. They can offer guidance on managing medication and make appropriate referrals on to other professionals, such as speech and language therapists and physiotherapists. Similarly, epilepsy nurses have the same sort of role and provide a source of expert knowledge and guidance. These specialist nurses and care advisers, as we have already heard, are the great unsung heroes of the National Health Service and their roles must be recognised for the tremendous support that they provide.

Turning back to Professor Hanna's report, I should say that, obviously, not all emergency admissions can be prevented. For example, although my condition is a muscular rather than a neurological condition, I myself had an emergency admission to St. Thomas's Hospital when I fell while trying to get into a taxi outside the Peers' Entrance four years ago. I am not sure that anything would have prevented my fall except for me to have been thinking more about what I was doing. However, the report's findings were broader, and showed that many emergency admissions could have been prevented with better planning. The four main factors that Professor Hanna identified in preventing emergency hospital admissions for those with a neuromuscular disease were: a delay in access to neuromuscular services; a lack of ongoing surveillance of the condition; the lack of an emergency plan; and the provision of appropriate equipment.

These findings backed up a report produced by the Muscular Dystrophy Campaign earlier this year, Invest to Save: Improving services and reducing costs. Tracey’s case is cited as a good example of a lack of planning. Her son has Duchenne, one of the most severe neuromuscular conditions. Despite being admitted to hospital with pneumonia, he was not assessed to be able to start treatment at home. With such treatment, his hospital admission could have been prevented. She said:

“My son’s first chest infection was pneumonia; in hindsight other professionals should have known he needed to start night time ventilation. Even after antibiotics and a 10-day stay in hospital, my son did not have assessments to determine his home ventilation needs. We should have been given instructions on chest physiotherapy and we should have had antibiotics at home to start treatment early. The hospital took several days to diagnose his chest infection believing it was a heart condition”.

Another shocking story about the same condition, but making a different point, illustrates why health professionals must find out about any emergency plan a patient has. Phillippa Farrant is from Eastbourne and has a 20 year-old son, Daniel, with Duchenne muscular dystrophy. He is seen at the Lane Fox unit at Guy’s and St Thomas’s Hospital in London. Speaking about Dan’s experience at the local hospital, Phillippa said:

“Dan goes in and out of hospital quite often and has received some good care but other times it has been horrifying. Boys with Duchenne … are prone to chest infections, partly because they become unable to cough and clear their lungs. This August, when I took Dan into the hospital with a chest infection they said it was just pain caused by him coughing a lot—a ridiculous idea as he has been physically unable to cough for years. I told them they were wrong and asked them to call the specialist but they refused. Delays in treatment like this are really dangerous for boys like my son. I am furious they played with his life in this way”.

I fear that the refusal or reluctance of healthcare professionals to co-operate in this way across different hospital trusts is all too common, and must change if patients’ lives are not to be put at risk.

I shall end with some positive news. Thanks to the MDC, a national neuromuscular work plan has been undertaken by the specialised commissioning groups across England since April of this year. They presented the results of the work they have done so far towards the national plan at a workshop in Cambridge this week. So we move slowly forward, but there are many challenges ahead in the complex and varied field of neurological conditions. It is vital that, in the new NHS landscape being created, no one is left behind.