Dementia

Baroness Keeley Excerpts

Thursday 10th January 2013 Commons Chamber

[Barbara Keeley (Worsley and Eccles South) (Lab)]

It is a pleasure to speak in this Back-Bench debate on dementia. I congratulate my right hon. Friend the Member for Salford and Eccles (Hazel Blears), the right hon. Member for Sutton and Cheam (Paul Burstow) and the hon. Member for Chatham and Aylesford (Tracey Crouch) on securing the debate and on their excellent contributions. I join others in saying how much I appreciated the moving and personal contributions from right hon. and hon. Members this afternoon. It must have been very difficult for them to talk about their personal experiences, but they did it very well.

My right hon. Friend the Member for Salford and Eccles has worked unstintingly on this issue, locally and nationally. Like her, I want Salford to become a dementia-friendly community. I share her pride that Salford contains one of the 10 national demonstration sites, in the Humphrey Booth centre in Swinton, which has its own day centre, the Poppy centre. I also agree with her that more needs to be done to improve our community services, to reduce hospital stays, to increase rates of diagnosis of the condition—many Members have mentioned that today—and to end the stigma that is so often associated with it.

I want to talk specifically about carers for people with dementia. As others have pointed out, about 10% of our 6.5 million carers are caring for a person with dementia, which means that at least 2,000 of our 22,000 carers in Salford must be in that position. The nature of the symptoms of dementia clearly makes providing such care particularly difficult. People with dementia can grow agitated, and they may wander at night and call out when asleep, which means that the carers themselves get little sleep. The personal care needs of those with dementia can be very great, as has also been mentioned today. Many people are performing a caring function for more than 100 hours a week. As we have heard, family members caring for a person with dementia must cope with personality change and loss of memory. Those very serious changes cause them to suffer feelings of grief and loss, similar to the experience of bereavement but before bereavement.

Dealing with that heavy caring work load also means that shortcomings in the provision of appropriate care services will be keenly felt. If carers do not have confidence in the quality or appropriateness of care, they will not have the confidence to take the respite breaks they so badly need. In 2007, when I was parliamentary champion for carers week, I visited some local carers and talked to them about our local services. One of them, a remarkable woman, was caring for her husband, who had vascular dementia. When she and I introduced ourselves, she told me “I am his nurse.” That was the change that had come about in her relationship with her husband.

The woman also told me how impossible it was proving to be to find adequate respite care locally. On one occasion, a week’s respite care had been arranged, with her husband staying at a local nursing home. Owing to a catalogue of problems at the start of the week, she then had no confidence that the home would manage her husband’s care properly, and she began to visit him there every day. By Wednesday, when family members found him lying unshaven in a soiled bed, she said that enough was enough, and brought him home. The end result of all her worries during those four days was that she developed eczema and had to visit her GP. That was her one week’s respite care.

One aspect of that woman’s life that she did praise was the support given by Crossroads Care, which is now part of the Carers Trust. Twice a week it provided two hours of respite care that she trusted. During one two-hour slot, she did her shopping at the local supermarket; during the other, she went to play bingo. When I asked her what we politicians could do for her and what changes she wanted to see, she told me that she wanted regulators who inspected care or nursing homes to ask carers for feedback about their experiences, and that, for herself, she wanted occasionally to have respite care lasting longer than two hours, so that she could wander around the shops rather than racing to get back home.

That was more than five years ago. I wish I could record that the situation for carers for people with dementia had improved radically in that time, but, given the increasing number of people with dementia and the crisis in the funding of social care—which has been touched on by several Members—the amount of respite care per individual carer cannot be stepped up dramatically, which is a pity. Crossroads Care told me that in 2008 it had provided 9,000 hours of respite care for 398 carers. This year it will provide some 13,800 hours of respite care for 567 carers. As I said earlier, we probably have some 2,000 carers for people with dementia, so the support is reaching only just over a quarter of the people who might need it.

The Health Committee’s recent report on our accountability hearing with the Care Quality Commission concluded that the regulator inspecting our care homes still did not have the confidence of carers, families and residents. It recommended that feedback from carers and other members of the public should start to be regarded by the commission as “free intelligence”, and that the regulator should act swiftly when complaints were brought to light.

In 2007 I introduced a ten-minute rule Bill, the Carers (Identification and Support) Bill, which required health bodies

“to identify patients who are carers or who have a carer”

and take steps to promote their health. I have introduced similar Bills subsequently, including, on 7 September this year, the Social Care (Local Sufficiency) and Identification of Carers Bill. I am still convinced of the need for health bodies—hospitals or, in primary care, GPs and their teams—to identify carers and ensure they receive information, advice and health checks. That would help avoid the isolation carers feel, which my hon. Friend the Member for Bridgend (Mrs Moon) talked about. They would be connected with professionals and other carers.

[Martin Horwood (Cheltenham) (LD)]

I agree with what the hon. Lady is saying, and, indeed, we might mention institutions such as the National Institute for Health and Clinical Excellence in this context. When I worked for the Alzheimer’s Society, we had the experience of trying to persuade NICE that evidence from carers about some quite difficult-to-research things such as behaviour and daily living skills was valid evidence when collected systematically and at scale—and, indeed, just as valid in its way as the evidence from things such as clinical trials and cognitive scales?

[Barbara Keeley]

Yes, and probably more so. The key concept here is that of the expert carer. Reference has been made to the professional carer, but I think expert carer is the right term. I shall talk about NICE shortly.

My Bill stated that health bodies should promote and safeguard the health and well-being of carers. They should ensure that effective procedures exist to identify patients who are carers or who are about to become carers, and ensure systems are in place to make sure that carers receive information and advice and that general medical services are rendered to patients who are carers. The reason for that is that carers will ignore their own health. They will entirely put the person they are caring for first, and put their own health to the back of the queue.

I was interested to see that this week NICE started a consultation on the topics prioritised for development in the quality and outcomes framework for 2014-15. The hon. Member for Banbury (Sir Tony Baldry) discussed the three indicators, the first of which is:

“The percentage of patients with dementia with the contact details of a named carer on their record.”

The second indicator is:

“The practice has a register of patients who are carers of a person with dementia.”

The third indicator is:

“The percentage of carers (of a person with dementia) who have had an assessment of their health and support needs in the preceding 12 months.”

I would have welcomed this development, as the identification and support of carers is a crucial issue, but I have some comments to make on the indicators. I doubt whether the QOF is the best way to achieve progress, and in some respects this issue is a higher priority. We currently give three QOF points to GP practices that keep a register of carers, but they could, in fact, have a small and static register of carers that they did not consult on, improve and develop. They would still get three points, however. The task of properly identifying carers and making sure they get the advice and support and the health checks they need is certainly worth more than the £400 that these three QOF points averages out as being worth. Is that what we think these tasks are worth? They surely must be worth more than that.

I have taken advice on this matter and I suggest that a better solution would be to tier the indicator payment based on the percentage of carers identified. Sufficient QOF points should be given properly to recognise the achievement of the task as well. It will take a number of people quite a bit of time to perform it, particularly if it is performed at the higher levels of achievement. Carers trusts tell me it is hard to find GP practices where more than 3% of carers are identified. The figure should be about 10%.

I fully support the indicator measuring the percentage of carers who have had an assessment of their health and support needs in the preceding 12 months, as that is a very important development, but why does it cover only carers of people with dementia? In my constituency there are carers of people who have had a stroke who have a very heavy, and very similar, work load to carers of those with dementia. It would be better to specify a small range of long-term conditions that lead to carers having a heavy caring work load, and they should be identified and receive assessments.

I want to record my thanks to organisations in Salford and elsewhere that do a wonderful job in supporting carers of people with dementia. I have mentioned the Humphrey Booth centre, and Age UK in Salford has a dementia support service. Those services are very important. They provide buddy cafés that support both people with dementia with activities and carers with respite. A buddy café lasts for five hours. That is a welcome period of respite for carers. There is a drop-in café at the HBC as well as a carers training programme, and it offers vital information, advice and advocacy services. It is a key partner in Salford, providing better quality services to people with dementia.

Last, but definitely not least, I should mention Salford Carers Centre, which plays a key role in identifying carers and helping them with information, advice and support. I believe that our practice in identifying carers, both in primary care and acute settings, is making a real and vital difference to helping our carers to care. I have invited the Minister, just as I invited his predecessor, to come to Salford to see what we do. The key other part of that now is Crossroads Care, which provides vital respite care.

I will finish on the issue about the funding of care, as many hon. Members have done. The right hon. Member for Sutton and Cheam referred to the moving speech made by a carer at the meeting earlier in the week to launch a pamphlet he wrote. In her contribution, that carer described the difficulty of managing catastrophic care costs for a person with dementia. She said:

“A £35,000 cap, as proposed by Dilnot (or even £50,000 or £60,000) could give me back my life. Our liabilities would be over. I could concentrate on my frail mum instead of the practical and emotional burden of single-handedly selling our family home. My mother has an incurable disease that has robbed us both of our lives; must it rob us of our assets too?”

I could not put it better than that, so I will not try to do so. As other hon. Members have said, we must consider setting the cap, up and down the country, at a lower level than £75,000, which will help people such as this carer. I have outlined a number of ways to support the carers of people with dementia, and I hope we give them the priority they deserve.