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Personal Care at Home Bill

My Lords, I thank the Minister for explaining the Bill. Having recently heard the Secretary of State for Health, Andy Burnham, speak to Cross-Bench Peers about this Bill, I have no doubt of his genuine wish to see this legislation help those most in need of care. He told us that the care his own mother had received was far from ideal. My husband was ill for many years as the result of strokes, Parkinson’s disease, diabetes and, eventually, a cancerous tumour. I can assure your Lordships that care at home is very expensive and has to be well organised, reliable and tailor-made for the individual. My husband’s wish, like that of many people, was to live at home. At the end of his life, we had a traumatic time when the out-of-hours doctors over the weekend let us down. Also, we could not set up a drip to give him antibiotics as he had a problem with swallowing. He died in the A&E department of a local hospital which could not retrieve his medical records as it was a Sunday. By that time, pneumonia had taken hold. Community care for people with long-term conditions has a long way to go to make it better and safe across the country, as it is now. With our personal experiences, it is not surprising that Andy Burnham and I feel that the present system should be made much better, but I have several queries relating to the Bill before us today. First, what will reablement consist of and how will it be given to a person in their own home? If a person is suffering from Parkinson’s disease, for example, they may need physiotherapy, speech therapy and occupational therapy. They will also need their drugs monitored. If their home is in a rural location, it will be very expensive in terms of the time of those professionals travelling from place to place. There can be long waiting lists for speech therapists, for example; how will the social services obtain the necessary staff? Reliable assessments can be difficult when people are elderly, frail and disabled. They can have good days and bad days. I have had personal experience with the North Yorkshire wheelchair service. Equipment can be vital for disabled people, yet communication in that area is appalling. When I tried to make contact last week, the only people in the office were a secretary and a volunteer. Pressure sores, which can be very serious, are estimated to cost the country several billion pounds a year, yet the wheelchair service, which supplies wheelchair cushions for prevention of pressure, is known as a Cinderella service. If the Government could make it efficient and quick, with staff who knew what each individual patient needed, much aggro and waste could be saved. This is one reason why I have my doubts whether the aspirations of the Bill will be distributed fairly across the country. All existing services should be made better first, or it will still be a postcode lottery. Secondly, the Bill seems to be concerned only with very severely affected people. Does the Minister not realise that sometimes a little help can make the difference of enabling people to stay in their own home? There needs to be far more flexibility. What will happen if only the severely affected people are helped? This will be unfair and impractical. Thirdly, who will do the assessments? Will there by a right of appeal? All Bills of this nature should have a clear definition so that it is transparent who will benefit from free personal care, otherwise there will be much dissatisfaction and an even greater postcode lottery. Parkinson’s is a long-term condition, and many people would benefit from preventive measures such as therapy services, aids and equipment, long before they develop critical levels of need. They would like to see this type of support extended to all who need it. They are also concerned that the process described in the consultation document on regulations and guidance is overbureaucratic, requiring people to undergo a period of intensive support before their assessment, followed by an assessment of their needs and then a separate assessment of their personal care needs. A three-stage process would be prone to waiting lists and confusion. It is essential that the process is as streamlined as possible. How long is the estimated time of the whole process before a decision is made for each individual once they have been assessed? The Parkinson’s Disease Society recently published the results of its largest ever survey of its members and found that one in four needed personal care services, but one in five was not receiving it. Also, their needs included home helps, house adaptations, equipment and medical expertise. It is evident that social care is drastically underfunded, and more help in the home is welcome, but the concern is about where the new money is coming from. I have heard that it may be coming from research—but which research? We desperately need more medical research in many fields—to mention just one, high-risk neuroblastoma, an aggressive cancer in young children. It is a devastating condition for the whole family as it is rare and difficult to diagnose. Much more research is vital at this very moment. One does not want to see the Personal Care at Home Bill taking much-needed research money. Somehow the money must be found without robbing Peter to pay Paul. There is no doubt that more specialist nurses and therapists will be needed if assessments are to be correct. As many of these conditions are neurologically based, the UK desperately needs more neurologists. I was told recently that the UK ranks alongside Albania in the percentage of neurologists to patients. We need more support for the centres of excellence dealing with these patients, who are often difficult to diagnose and need their drugs monitoring by experts. They also need personal care at home. The Bill may be short but the implications are huge. It needs careful consideration and cannot be done on the cheap, otherwise many mistakes will be made and there will be many disappointed people.