Health Bill [HL]

My Lords, I begin by declaring my interest as an honorary vice-president of the Muscular Dystrophy Campaign and as someone with that condition. I enter this debate with great trepidation, surrounded, as I am, by so many experts in the health field. I shall confine my brief remarks to the part of the Bill concerned with direct payments, and, in doing so, I shall probably echo what many other speakers have said, particularly the noble Baronesses, Lady Campbell and Lady Howarth. The proposal to pilot direct payments, which would give certain patients the right to choose the NHS services they need, is welcome. Indeed, it could transform the lives of people living with complex, multi-system disorders, many of whom are not receiving the care that they require. Campaigns by the Muscular Dystrophy Campaign, for example, have shown that the NHS is currently failing many patients with rare and complex conditions who either have to pay for these services privately or go without. I am talking here about services such as specialist nursing care, physiotherapy, hydrotherapy, and speech and language therapy. A shocking example of the lottery in provision in different areas of the country is the case of boys and young men with Duchenne muscular dystrophy. If they are able to access the right specialist care, which means receiving home ventilation and specialist multidisciplinary care, they might have a life expectancy of almost 30, whereas if they do not have access to such care, life expectancy could be nearer 18. While I am mentioning Duchenne muscular dystrophy, I must mention the next speaker, the noble Lord, Lord Walton of Detchant, who is one of the great pioneers of research into Duchenne. I pay tribute to all that he still does to help the Muscular Dystrophy Campaign. A less dramatic example than Duchenne is that of a patient with congenital myopathy whom I heard about at lunchtime. She was experiencing problems with her neck and was given three very useful sessions of physiotherapy. On asking for just one more session in three months’ time, she was told, ““We don’t do that””. Welcome though the pilots in direct payments are, it is very unclear, as has already been mentioned, how they will work in practice. Perhaps the most crucial question of all is whether the supply of services will match the demand. If physiotherapy and even hydrotherapy are to be funded, for example, how will these services be commissioned? Another key question is how they will work when emergency or intensive care is necessary. For neuromuscular patients, this may be during chest infections or after spinal surgery. Another question is what will happen if a physiotherapist, funded by a patient using direct payments, calls in sick. Will cover be provided or not? I gather that under the direct payments for social care, that would not be the case. Another area of concern is the inflexibility of patients not being allowed to part-fund their care—in other words, no top-ups from their own resources. This seems extraordinary. Under the Motability scheme, for example, people receiving higher rate DLA mobility allowance can make a down-payment for a suitable vehicle, which is then funded through a leasing system out of their DLA benefit, thus mixing their own resources and state support. I shall be interested in the Minister's comments on this. Will the Department of Health draw on the Scottish experience in the pilots? In Scotland, community healthcare has been included in some social care individual budgets following guidance from the Scottish Executive endorsing a holistic approach. In Scotland, the NHS has power to make direct payments to local authorities, and health and social care funds can be pooled. The guidance states: "““While health care remains free at the point of delivery, best practice will still allow health boards to share funds with their local authority partners to provide joint care packages that cover both social and health care needs””." So far, so good, but the Scottish system excludes some vital services: for example, direct access to a consultant; oversight by the assisted ventilation nurse team; physiotherapy; and provision and maintenance of equipment. If direct payments in England are to be used in a similar fashion, they will be of limited benefit for people with rare and complex neuromuscular services. I now turn to one of those services that in some areas the NHS would normally fund, but which is often denied for one reason or another to those with muscle disease. That service is hydrotherapy, and this is where I mount my hobbyhorse for a few moments. Hydrotherapy is a tremendous help to those with limited mobility and strength. It allows patients to take vital exercise in a warm and supportive environment, which would be much harder to do on land, thus increasing their overall well-being; and it allows patients to do something for themselves, with many of them saying they feel the benefit for days afterwards. However, even if a suitable hydrotherapy pool can be found for patients with long-term neuromuscular conditions, they are frequently limited to six to eight sessions and then discharged. They usually cannot be referred again for between six months and a year. Even more seriously, many NHS hospitals see hydrotherapy as a luxury they cannot afford, even though studies carried out in the UK have shown that it can be a cost-effective way of helping patients to improve their overall quality of life, especially when combined with land-based physiotherapy. If services are to be funded on the basis of clinical need, who determines whether there is a clinical need for a service, such as hydrotherapy, for very specific conditions where there is definitely benefit to the patient? I shall be interested to hear the Minister's views on this particular service, which I threaten to raise again at another time so that the whole subject can be explored in more depth. Finally, will the Minister ensure that his department draws up the vital regulations for these pilots in full consultation with service users, and will he please ensure that the House sees the draft proposals before the Bill completes its passage?