Disabled Persons (Independent Living) Bill [HL]

My Lords, I congratulate the noble Lord, Lord Ashley of Stoke, on his unremitting pursuit over the years for better facilities for disabled people. I am sure all noble Lords will agree with the aim of the Bill that: "““disabled persons enjoy the same choice, freedom, dignity, control and substantive opportunities as persons who are not disabled at home, at work, and as members of the community””." As a disabled person—I broke my back in 1958—I must declare an interest. I was married for 46 years to a wonderful husband who had many serious health conditions in the last 11 years of his life. They included diabetes, strokes, DVT in his leg, a bleed in his head, an embolism in his lung, Parkinson’s disease, a cancer tumour in his lower bowel and an open wound that had to be dressed twice a day. I therefore know only too well what support and help some disabled people need if they are to remain in their own home, which is the wish of most people. I shall restrict my remarks on the Bill to the clauses dealing with health matters, and I hope that the Minister will listen to some of our pleas that the Bill gives us the opportunity to air. Clause 7 is entitled: "““Further duties of NHS bodies””," and it mentions palliative care services. They are still very patchy across the country. When my husband became ill with pneumonia, I had to deal with the out-of-hours doctor service. He started running a temperature, and I dealt with three different doctors, all 26 miles away. One came out on Saturday and prescribed an antibiotic. As my husband had difficulty swallowing, we had to chase from chemist to chemist to find one that had it in a liquid form. On Sunday, my husband was worse, and I telephoned again. It was hours before the doctor telephoned back; the out-of-hours vet service would have been much quicker. By the afternoon, my husband to go to hospital, and he died in the A&E department of Harrogate General Hospital. For seriously disabled people, this must be improved. The NHS is very fragmented. I know it is better in some parts of the country, such as Cambridge where, I am told, seriously at-risk ill patients are put on a register so that the out-of-hours doctors know about them. This is something that PCTs could improve greatly. In my husband’s case, there was no way for the hospital to get his notes. I mention that as I want it improved so that other people do not to have to go through what I went through. My fear is that as PCTs cover such large areas, the service will get even less personalised and more fragmented. Last week, I attended a conference on cancer where I heard about the hopeful development of community palliative care in Lincolnshire, but it is a drop in the ocean. Clause 5(1) states: "““It shall be the duty of each local authority and each NHS body in carrying out their functions to promote independent living for disabled persons””." I bring to your Lordships the most worrying Department of Health proposals on Part IX of the Drug Tariff: cuts in patient services and reduced access to prescription products. As the president of the Spinal Injuries Association, this is a concern of many of our members, and of many people who have had or have cancer and have to use catheters and stomas. These are essential products. Specialist products allow NHS patients with complex conditions to lead a near-normal life and maintain their independence. Appliance users can continue to work and contribute to society. Access to advice via specialist nurses and telephone helplines is vital to support patients’ self-care, as promoted by the Government. The Department of Health’s proposals will lead to the withdrawal of large numbers of specialist appliances. People who have used specialist products to live independent lives for many years will face distress and disruption if their prescribed product is withdrawn because of price cuts. The department proposes to place a cap on the number of specialist nurse visits and stoma customisation which will be funded. That is very small service that can help so many, and to cut it is ridiculous. The services ensure that patients are provided with the right product, which is individually tailored. If this is halted, clinical complications or infections may arise with serious implications for patient health and NHS resources. The saving that the department is trying to make is a tiny proportion of the total NHS budget and the overall savings target, but the most vulnerable patients will suffer. Patient groups, healthcare professionals and the industry have expressed serious concern about the impact of the department’s proposals. They urge the Government to ensure that their proposals do not lead to products being withdrawn or services cut back. Many of these products are provided to patients in their own homes by the home delivery service. That is a most useful advantage to everyone concerned. I ask the Minister to help some of the most disabled service users in this matter. The department’s plans are laid out in a review document that is out for consultation until the end of December—this month. As many of our paralysed members get older, there are increasing difficulties in shoulder and wrist movements, with overuse. There are increasing difficulties with bladder and bowel and the skin gets thinner and more vulnerable. They need more help to continue to live independently. Many disabled people are very much at risk when they have to be treated in hospital from picking up infections such as MRSA or Clostridium difficile. I personally know two people who have been in hospital in the past year and have both had C difficile and MRSA. One is the brother of one of your Lordships. He has had cancer and it is a miracle that he is still alive after having had MRSA and C difficile twice. Neither of those people is old. The Bill is intended to allow disabled people to enjoy personal dignity. It should be everybody's aim to strive for this. When one hears of patients being treated roughly by nurses or care assistants as they are moved in agony while in hospital, one wonders whether the nurses know about TLC. When food is left and taken away because nobody has ensured that the patient is fed, when fluids are denied to a thirsty patient, when patients are left for hours in a soiled bed, when nurses talk over patients, where is the dignity? When nurses are more interested in planning their nightlife than talking to their patients, it is put down to the modern generation, but with more hands-on training and supervision by dedicated sisters, we could have better nurses. Too many sisters have been submerged in administration, which could be done by ward clerks. Patients, especially disabled ones, should not have to suffer with swallowing difficulties. The discharge of disabled patients from hospital should be well planned, not left until the last minute. Perhaps the national framework for NHS continuing health care and NHS-funded nursing care will help in this matter. The Bill encompasses such a diversity of people with all sorts of disability, and impairments. I am so pleased that it stresses choice as one of its priorities. Where there is choice, one is most likely to get a good standard of care and support. I am not sure that this will be easy to achieve in some rural areas, but there is a great deal to aim for. The existing system does not provide rights to portable support. If you move to a different part of the country, you have to start all over again and negotiate a new care package from scratch. As provision is so patchy across the country, with postcode lottery still in place, I can see why that happens. As I find that mental illness can be difficult and patients can be a danger to themselves and others, I ask the Minister: do people with mental health problems have no right to assessment or treatment and support for their mental health needs? A high proportion of mental health service users are denied an assessment for social care services unless they reach a high initial threshold of serious mental ill health. If they are denied an assessment, how can that be proved one way or the other? I do not understand that and I hope that the Minister will explain it. The Bill is giving much food for thought. I hope that, whatever the life of the Bill will be, it has already shown that there is a great deal to do if improvements are to be made.