Provision of Epilepsy Services

Baroness Pitkeathley Excerpts

Tuesday 30th November 2010 Lords Chamber

[Baroness Pitkeathley]

My Lords, I congratulate my noble friend on securing the debate this evening and on speaking to us powerfully and movingly from her personal experience. I also congratulate her on her fortitude and patience—perhaps I should extend those congratulations to everybody who is going to speak—for waiting until this late hour to start the debate. In my short input—and it will remain short, in spite of the extra time given to us—I want to focus on a problem associated with epilepsy to which the noble Baroness has referred: the difficulties faced by those who are involved with caring for sufferers. I hope the Minister will be able to respond by assuring the House that carers will be included in any plan for improving support provided to sufferers of epilepsy.

The House is familiar with the problems faced by family carers who provide the bulk of health and social care in our country. The statistic of saving £87 billion for the whole of our society is one that many members have heard me quote—I dare to say ad nauseam. If you have a loved one with epilepsy your duties may include keeping them safe during a seizure; giving first aid or emergency medication; helping with the taking and monitoring of drugs; providing descriptions of seizures for medics where necessary; acting as an advocate or representative; providing transport; and perhaps helping to organise home adaptations. And, of course, as we have heard, those with epilepsy may have a whole range of other conditions that require assistance from their carers.

While much of what these carers do is the same as many of the 6 million carers in the United Kingdom, there are some special difficulties to which I want to draw the attention of your Lordships. The first concerns the onset of caring, which, because of the nature of this illness, is likely to be sudden and quite unexpected; there is no time to prepare or to get information which could help you as a carer. Many of these carers are therefore very often at a loss; they are finding things out by accident, sometimes—very often, actually—not even recognising themselves as a carer. You see yourself as a wife, a mother, a husband, yet identifying yourself as a carer is absolutely key to accessing the right kind of information.

Secondly, as we have often heard, this illness is by its nature spasmodic and changes over time. Therefore there is no simple analysis of the help that is needed. Moreover, since sufferers are, or at least seem, perfectly all right in between episodes and the seizures themselves are often unwitnessed, it can be difficult for the carer to convince anyone that help is needed. This may be particularly so in the case of the psychological effects of this illness: the stress, depression, mood changes and frustration which are so often a feature. Many local authorities, for example, providing social services and social care, do not recognise epilepsy as a condition which has particular care needs. And so the carer’s assessment, which is the right of every carer, hard-fought for by Carers UK, myself and others, is therefore denied them. Without an assessment, there is no access to local authority care packages. Local authorities need guidance, and it would be good if the Minister could assure the House that some of these issues of hidden conditions will be addressed in the refreshment of the national strategy for carers.

One more concern I have is the attitude of some professionals to the carer in this situation. No one is more committed than I to the rights of the user, the patient; I hope my record shows this. However, the fact is that in many cases the carer is more of an expert in the progress of the disease, the nature of the seizures, the signs leading to them and the effects of drugs than the user him or herself, and certainly more of an expert than many of the professionals with whom they come into contact. The carers should therefore be consulted and their opinions taken into account, of course with sensitivity to matters of confidentiality and with the permission of the cared-for person. Very often the carer’s view is completely overlooked—often, I acknowledge, with the best of motives. The doctor or nurse is concerned to help and relieve the carer, but this is not a good use of the expertise the carer has developed. Their views must be sought and taken into account. A lack of specialist knowledge has been highlighted by my noble friend Lady Ford. Yet carers themselves often have specialised knowledge—only of one particular case, but it is very specialised and should not be ignored.

Your Lordships will be aware that much progress has been made for carers in recent years, but there are serious concerns about how the reforms to welfare and the social care system will affect them. I hope the Minister will be able to reassure me and the House about the coalition Government’s commitment to carers. By way of an aside, I say to the Minister that I will not be in my place when she sums up but I will be in the House, on the Woolsack.