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8.51 p.m.

Baroness Gould of Potternewton: My Lords, I wish to express my appreciation to the noble Baroness, Lady Cox, for initiating this debate which gives me the opportunity, with the indulgence of the House, to raise the need for community care of a group of people with learning difficulties who fall outside the general criteria. They are not mentally handicapped, nor are they necessarily elderly. I refer to those people who, as a result of a stroke or accidental injury to the brain, are left with damage to the language centre of the brain and who suffer as a consequence from dysphasia. I declare an interest as a vice president of Action for Dysphasic Adults.

It is estimated that there are more than 200,000 people with dysphasia in the UK at any one time. Dysphasia is an invisible and serious disorder of language where the intellect remains intact and the thought processes are normal but the person loses the ability to use language. It can affect many aspects of communication, including speech, writing, reading, memory, gesture, concentration and understanding of the spoken word. It can vary in severity and can change over time.

Dysphasia can isolate the sufferer to a degree almost unimaginable to the rest of us. One sufferer described the experience as being,

"locked inside my own head".

But because of its complexity and the multiplicity of the impairment, it is little understood by doctors, social workers and providers of services in the community.

It should be a joy to return home from hospital, but for a person who is dysphasic that joy can often be short lived as they are confronted with the every-day reality of their limitations, together with reminders of what they have lost. Many experience fear and uncertainty and require instant support and understanding, because for dysphasic people the very tools needed for finding, understanding and using information are damaged. This means that information needs to be brought to the dysphasic person's attention rather than the reverse.

In some cases there is a seamless transition from hospital to home. Social workers and community based services efficiently address the needs of these people, organising claims for benefits, implementing support

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from therapists and providing household aids and appliances. For others, discharge from hospital can mean the end of any provision, either because none is available in the community or the patient is not informed of the support that may be available. That support varies greatly throughout the country. One has to examine why that might be the case. Sometimes it is a case of a lack of resources; often it is determined by the severity of the impairment; in part it is determined by local policy and, as I said, availability of resources; and in part by the quality and accessibility of information.

While there are case studies that identify good practice--which is as it should be--there are far too many illustrations of people waiting months for any form of therapy, of benefits and entitlements that are never arranged as promised, of complete cessation of services without notice, of social workers not turning up or answering the telephone, and of patronising doctors and officials being rushed and irritated at the dsyphasic person's inability to express himself or herself.

It is true that many non-dsyphasic people experience similar problems with health, social and other services. However, people who have a communication impairment are particularly vulnerable when negotiating provision for their needs. Because of the invisibility of their impairment, its nature and effects are not understood and the vulnerability of those struggling to communicate is not perceived. This often means that they go without community services which would be most useful to them. Equally, if they receive services which are not satisfactory they do not have the ability to object.

Whatever the severity of the impairment, basic support services are essential; first, a GP or social worker who understands the problem. It is also essential to have advice from a welfare rights officer on weaving one's way through the complexities of the benefit system, and a community team of therapists--a physiotherapist, if one is physically impaired, an occupational therapist to develop independence, and a speech and language therapist. Their expert help and guidance is the most crucial factor in aiding recovery.

The isolation, confusion and perceived lack of a future is often accompanied by severe distress and depression, but there is a dire shortage of counsellors. The speech and language therapist may assist, but it is usually the unqualified carer, member of the family or friend who takes on that responsibility. That is far from satisfactory.

All the analysis of need shows that it is not only availability of services within the community which is important to a dysphasic sufferer. There also has to be a greater understanding by those providing the service. Services need to be accessible and must be appropriate and adequate. They must be promptly delivered, reliable and consistent, and relevant to the needs of the individual. When information is given, it should be simple to understand and frequently repeated.

In the light of the particular requirements of a dysphasic sufferer, I ask the Minister whether any studies have been carried out by her department into the

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needs of this group of people who suffer from such severe learning difficulties, whether any specific advice has been given to health trusts and local authorities and, if so, whether there has been any monitoring of provision. I close with the words of a dysphasic adult who had been let down by his community based healthcare providers and who said,

"I want to bang their heads together. I want to fight for my therapy".

9 p.m.

The Lord Bishop of Newcastle: My Lords, I thank the noble Baroness, Lady Cox, for providing us with an opportunity to discuss this important subject. There will be general agreement among us, and in the country at large, that the achievements of the past 10 years or so have been very considerable and that there can be no going back. Those who know most about work in this field tell of the way in which many people formerly in institutional care have blossomed and thrived. But time presses and I wish to touch on three specific matters.

First, I have the impression that for obvious reasons much of the thrust of community care has been focused on closing down hospitals. As a consequence, those who live with their families have been a low priority. Those who were moved out of hospitals brought with them a dowry. Money saved in the hospitals was made available to make provision in the community. Local authorities, and others responsible, face real difficulty in making full and proper provision for those who have never been in hospital. That group, which includes most of the younger people with learning difficulties, has complex needs. Much will depend on good information and diagnosis at the outset, good planning at the critical age of 13 to 15 years, awareness of their diversity of need, and willingness to help them into whatever training, work or social activities may be appropriate. All who work in this field underline the importance of strong support and respite care for the parents and families of those with learning difficulties who have stayed at home and have been cherished there. In other words, the first point is to draw attention to the needs of those who have never been in institutions.

The second point concerns attitudes in wider society. On the whole, the general public believe that those with learning difficulties should not be kept in hospital. But there is still some reluctance to have them as neighbours, I fancy. The local churches can and do play a part here. They are accustomed to caring for people locally and in the setting of a community. Indeed, in the past three or four years there have been presented to me for Confirmation quite a number of adults who had formerly been in hospital. On release to homes in the locality, they have been welcomed into the congregation of their parish church. They have found their feet there and this has helped their integration into wider society. In general the churches are comfortable working with statutory and voluntary services and agencies. In certain areas there have been initiatives promoted by the churches, welcomed by the local authority, practical steps taken to provide work in churches, and awareness training made available for people in churches. In any

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case, many congregations are involved with voluntary groups which work in this field and regard it as a proper expression of Christian care.

The third point relates quite simply to money. Probably every participant in this debate will come to this point sooner or later, and the day after Budget day may or may not be the best occasion on which to address it. As I have mentioned, local authorities experience particular difficulties in finding or raising money to meet the continuing needs of those who have never been in hospital. Even for those who have been in hospital there is difficulty in providing long-term funding, for, to put it crudely, the original calculations were based on an assumption of rate of turnover which is not being realised as people now live longer.

I am aware that matters of finance are complex and technical and that one would be well advised not to venture far into this field. But I am advised that there are particular difficulties with some of those in community care who fall between invalidity benefits and incapacity benefits, and who may also fail to qualify for jobseeker's allowance. There are also particular difficulties on occasion with regard to housing benefit. In some cases, the administration of the Registered Homes Act 1984 and the Registered Homes (Amendment) Act 1991 are placing unnecessary financial burdens on caring agencies.

My time is up. We are all, I am sure, immensely grateful to the noble Baroness, Lady Cox, for having raised the subject and for having treated it so sympathetically. That in itself will help to raise its public profile, not least in such a way as to make it easier for its financial requirements to receive the attention which they need.

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