Health Bill [HL]

My Lords, I hope that the noble Lord, Lord Darzi, will forgive me: weather conditions make it difficult for my personal assistant to attend me late at night and, as my direct payment does not run to danger money, I will have to leave before the end of the debate. I welcome the opportunity to participate in this debate. I shall confine my remarks to Chapter 3, which concerns the piloting of direct payments, with which I have had great experience and obviously have an interest as a direct payment user for many years. One of my first visits to your Lordships' House was in 1993, to hear the noble Lord, Lord McColl, move the Second Reading of the Disabled Persons Services (No. 2) Bill. During his speech, the noble Lord spoke of Mrs D, whom, he said, was, "““young and married. She works as a training director and pays taxes. She receives a cash payment from her local authority, makes her own personal assistance arrangements””,—[Official Report, 21/4/93; col. 1644.]" and contributes very effectively. Sixteen years later, Mrs D is very happy to be a Member of this House and to be speaking in this debate. The Bill tabled by the noble Lord, Lord McColl, which was of such foresight, passed all its stages in this House but did not survive in another place. However, it loosened a nut and the result was the Community Care (Direct Payments) Act. That Act is one of the reasons that I can be here today. Direct payments in healthcare could have a similarly life-enhancing effect on many more people. I know that many people are wary of direct payments. They were when they were introduced into healthcare and social care all those years ago, and I am hearing all the same arguments again. It is like Groundhog Day. It is a big cultural shift from ““the doctor knows best”” to ““the patient may know better””. To ease that anxiety, I look to the noble Lord, Lord Darzi, to take full account of the Welfare Reform Bill, the Putting People First concordat and the cross-government independent living strategy, all of which are at different stages of developing personal budgets. All three have direct implications for direct payments in health. The healthcare pilots must learn from the developments in these other areas and join up health budgets seamlessly. You cannot do it if you do it alone. People do not want their lives to be fragmented across different funding streams, organisations and policy aims, but this is happening. The Minister will know that the Welfare Reform Bill had its Second Reading in another place last week, and that Chapter 5 of that Bill specifically refers to giving disabled people and those with long-term health conditions a ““right to control”” their support arrangements, which may be in the form of a direct payment or choice and control over existing services. It is essential that the Minister and officials at the Department of Health and the Department for Work and Pensions co-operate closely with one another at this stage. Certain health budgets could be effectively deployed by service users to help them to enter and to stay in work or to keep them active in the community. I have an example. I am currently in contact with a young disabled woman who requires personal assistance throughout the day. That assistance is funded through a direct payment and an ILF grant. She also needs regular physiotherapy, but that is designated as healthcare. She finds it very difficult to access a service that fits into her working life. She would like to purchase a service that is flexible enough to come to her place of work in the lunch hour, but no service is flexible enough to do that, so there is no physiotherapy. If we had a health budget, not only could she only catch up with her work but she would probably get her bonus target at the end of the week. This woman does not want to go to an agency for the support that she needs at work, to another agency for the support that she requires at home, and to another for the support that she needs to meet her continuing healthcare requirements. As someone who has lived and breathed direct payments in social care for several years, including serving in the cross-departmental task force that brought them into force, I thank the Minister for the commitment in the Health Bill to involve charities and the private and voluntary sectors in the pilot schemes. Experience in social care has demonstrated that, although the benefits of direct payments are immense, so too are the risks, especially for individuals who are yet unused to choice and control. The temptation to play it safe by sticking with existing services, even if they are inadequate, will be strong unless individuals know that they have access to impartial support. Such support is best provided by peers who have similar experiences, such as those in centres for independent living in social care. The Department of Health and the DWP’s Office for Disability Issues are doing much work to develop user-led organisations—they call them ULOs—and I hope that the Minister will ensure that the direct payments that are mooted in the Bill gain from this approach. Finally, I should like to give a brief example of how direct payments in healthcare could have made my life a lot easier last year. As I am unable to move unaided, I sleep on a ripple bed, which prevents me developing pressure sores. The mattress developed a serious puncture. It had been good for years and years, and I used to mend the holes with a puncture repair outfit from the bicycle shop, but eventually the mattress had had it. I went on to the internet and found an exact replica costing £200, and I did this to save the PCT time and effort. But the PCT insisted on sending out a district nurse to reassess me, even though I gave an assurance that my condition had not changed, and that the mattress was only a replica. But it was not to be. Instead, there followed a series of very costly visits. The first involved a 16-page questionnaire. My pulse was taken and I was asked how many times a day I go to the loo. I am not sure what that had to do with the bed, but there you go. The district nurse asked if I had a pressure sore, and of course I said, ““No, I use a ripple bed””. She replied, ““Oh. In that case, you don’t need a ripple bed and I can’t give you one””. I pointed out that the reason I did not have pressure sores was because I used a ripple bed. It is called prevention. The district nurse then told me that I would need to see the tissue viability nurse—it is getting good—as she was not authorised to give me a replacement mattress. Exasperated at having to take another day off work, I agreed to a second visit. The more expert professional on the second visit assessed me, looked at the 16-page form and said that I needed a super-duper, extra-thick air mattress costing £3,000. It was not what I wanted, not least because it would raise me a foot above my husband in our bed. To that the nurse retorted, ““But my patients don’t sleep in double beds””. I thought that that would be tricky for our marital relationship. The nurse then said, ““Anyway, take it or leave it””. I said that I would take the air mattress, sell it on eBay, and use the cash to buy a lifetime’s supply of ripple mattresses. At that, the nurse went back to the office and the PCT relented. I am happy to inform the Minister that I have saved the NHS £2,650.