Health: Neurological Conditions

Baroness Pitkeathley Excerpts

Thursday 8th December 2011 Lords Chamber

[Baroness Pitkeathley]

My Lords, as I follow the noble Baroness, Lady Gardner, perhaps I may say that I have met her daughter, very much admired her indomitable spirit and am not surprised that she won her campaign with the buses. I thank my noble friend Lord Dubs for giving the House the opportunity to debate this important issue. Your Lordships will not be surprised to know that I want to concentrate mostly on the problems raised by families and friends who care for people with neurological conditions, and principally those who are looking after someone with conditions such as dementia and Alzheimer's.

First, let me say a word about the particular problems for carers of those with neurological conditions. Many of them are fluctuating conditions. MS is a case in point, as my noble friend and the noble Baroness have reminded us, so that the need for support is not constant. It is not easy, therefore, to have a once-for-all assessment which provides you with ongoing support. Sometimes, your needs are much greater than at other times, and that is often very difficult to feed into the assessment process. Carers nearly always have a problem identifying themselves as carers anyway—particularly as people with needs for help which are separate from but intricately linked to those of the person suffering from the condition.

People say: “I am not a carer. I am a wife, a husband, a daughter, a son”. Time and again, we come across the fact that once you have identified yourself as a carer, you can access services and people who can help you, but unless you make that connection, you cannot get yourself into the system. I will never forget a carer who some years ago gave me a wonderful analogy of that. She said, “I feel as though somewhere there is a great mushroom of information and help. If I could find my way to the stem, I would find my way up and into the mushroom, but I do not even know where the stem begins”. That is an interesting picture that we might keep in our minds. Those problems are especially acute for people with fluctuating neurological conditions.

I turn to a condition which, sadly, rarely fluctuates but is progressive and terminal and is the cause of huge stress for carers—perhaps, because of the very nature of the condition, it is sometimes more distressing for the carer than for the sufferer. I refer of course to dementia. Currently, 600,000 carers are looking after somebody with dementia and the number of sufferers, as your Lordships will know, is estimated to rise to at least 1 million by 2025. One in three people over 65 has some form of dementia, and a quarter of hospital beds are occupied by sufferers, so it is a huge problem of our time. It is associated with increased longevity—a cause for celebration, as we often say—but undoubtedly also a cause of stress for caring families.

The stress manifests itself in three different areas, all of which need support. First, there is the financial situation. Although many carers for people with dementia are themselves elderly spouses, there are still many who have given up paid work to undertake the task, resulting in substantial loss not only to their current but their future potential income in the form of much reduced pensions. The costs associated with caring, such as the need for increased heating—a particular problem at present with the rising cost of fuel—special foods, special transport, and so on are all a cause for concern. I make special mention of an often ignored problem: that of dealing with incontinence. Not only is it incredibly distressing to deal with, it also costs more. We are constantly hearing reports of how the rise in VAT has hit families who care, because they are having to spend more on a range of VAT-rated products such as cleaning materials, detergents, bandages and, in particular, continence pads and bedclothes. Families frequently raise the magnified impact of high energy costs, as they have to have the washing machine on every day to wash bedsheets and clothes as a result of incontinence.

The income of those families—those carers and sufferers—must be protected. I know that noble Lords who have been speaking on the Welfare Reform Bill—I am glad to say that some of them are speaking here today—have been really banging that drum. The House owes them a great debt of gratitude for all the work they have done thus far on the Welfare Reform Bill, which comes to us on Report next week. I know that the disability population owes them a great debt of gratitude.

Carers’ physical health is often also affected by caring. Sixty per cent of carers report a back injury of some kind. Although the noble Lord talked about the technology—hoists, and so on—time and again you hear families say, “They did not supply the hoist”; “It was the wrong kind when it came”; “I could not work it because they had not taken notice of the fact that my wrists are weak”; and so on. They are often affected by lack of sleep, as dementia sufferers often turn night into day and have to be watched constantly. Respite provision is increasingly hard to come by, carers report, as local authorities cut their budgets and as the voluntary sector, which often provides the best form of respite, is struggling to maintain services. Commissioners, who are always frightened about what carers will ask for if they ask them what are their respite care needs, should be reassured, because every piece of research shows that carers habitually ask for less than anyone thinks that they will want. You offer them a fortnight off and they say, “No, I do not want a fortnight off. What I want is one night's sleep once a fortnight or once a month”. That is not too much to ask considering that that is how we will keep the carers going for, often, many years.

Perhaps the most difficult problem that carers in this situation face is the emotional consequences of dealing with a loved one whose personality has changed, who may no longer recognise them and who may be aggressive—even violent—where once they were placid. Often, the potential providers of support focus entirely on the patient; they do not even notice the stress on the carer. Many a time, you will meet a carer who says, “The time the GP turned to me and said ‘How are you?’ was the most amazing moment, because I realised that someone else had noticed”. That is where carers’ support groups can be of tremendous help. They can meet other people in a similar situation and admit feelings that are hard to admit, such as the fact that you are violently angry with the person you are caring for.

I reiterate what has been the theme of your Lordships’ scrutiny of the Health and Social Care Bill. It is no use simply making changes to the NHS unless you include social care provision. It is not enough to increase inspection regimes or to talk endlessly about extra regulation. We have to change the culture surrounding the provision of social care. We had to change it at the Department of Health. I commend the work of David Behan, Paul Burstow and the Minister here on that. It is to be hoped that the forthcoming White Paper on social care emphasises that it is as important as healthcare. We have to change the culture in service provision, so that we regard services for people with dementia as ranking in importance with what we give to lifesaving surgery and medicine. It is not as glamorous, heaven knows, but those in the situation I have outlined regard it as of just as great importance.

We also have to change the culture of those who work in the service. I acknowledge the skills and dedication of many employees in this most difficult of areas, but too many employees’ values are not what we could wish. I was talking to a care provider recently who told me that they were turning the interview procedures for those who wanted to become care assistants on their head, so that they start by testing their values, not their skills and experience. We could do more to ensure that others do the same and reject those who do not meet the values test. Of course, as long as care workers are so poorly paid, it is difficult to increase the status of this work, but it should surely not be beyond the wit of those who work in the field to promote the fact that caring for those most vulnerable people carries with it more satisfaction than stacking shelves in the supermarket.

Caring for those with dementia is not a problem which will easily be solved, but as it is not going to go away, we must all take more responsibility for ensuring that we do it as well as possible. With one in three of the older population having some form of it, it will happen to every one of us or to someone we love in the foreseeable future.

Finally, without reiterating the long debate we had yesterday about the future of social care, and with apologies to the Minister for banging on endlessly about this subject, I feel that the long-term solution to the problems that we are looking at today is a partnership approach to the funding provision of care as set out in the Dilnot report. It seems to me that we owe that to the families who continue to care, who do it willingly and with love but rarely with enough support.