Appendix 1 for the address and telephone number). Their website also has useful information and a search facility to find continence clinics/advisers in your local area. See also the PDS publication Looking after Your Bowel and Bladder in Parkinsonism(B60) which was co-written with the Continence Foundation. A local Parkinson’s Disease Nurse Specialist (if available) could also be a useful contact for you. See questions earlier on in this chapter for details of their role.
Primary Care Trusts and social
The PDS publication Meeting Your Health and Social Care Needs (B70) provides more information on health and social services and how to access them.
Contact details for your local Primary Care Trust should be in your local phone book. If not, your GP surgery should have details. If you have web access, many Primary Care Trusts have their own websites.
What is NHS Direct?
NHS Direct is a telephone patient information service for England and Wales provided by the NHS. It operates a 24-hour nurse advice and health information service, providing confidential information on what to do if you or your family are feeling ill; particular health conditions; local healthcare services, such as doctors, dentists or late night opening pharmacies; and self-help and support organizations. Calls are charged at local rates. A similar service in Scotland, called NHS 24 is being developed. At the time of writing (January 2004), it is only available in some areas but the whole of Scotland should be covered by the end of 2004.
NHS Direct also has a website containing information on a wide range of health issues. (See Appendix 1 for contact details.) What services do social services departments provide?
Social services departments are part of local authorities and are responsible for providing services to people with various social and welfare needs. People who are elderly or who have a physical, mental or learning disability form the majority of their clients. Social services departments provide (or increasingly nowadays arrange access to) places in luncheon clubs, day centres and residential homes; practical help in the home such as home helps, home care workers and Meals on Wheels; and adaptations and special equipment, which enable people to stay in their own homes. Social services departments also provide information, advice and counselling to people who are old or disabled and to their carers (see Chapter 6 for further discussion of services for carers).
Your local phone book should have contact details of your local social services department. If not, your GP surgery, or Citizens Advice should be able to provide contact details.
My elderly mother is going to come and live with me as she can no longer cope alone. How can I find out what care services are available in my area?
You should contact the social services department and the Primary Care Trust for the area in which you live. They have a duty to provide information about their services and about which people are eligible for them. They can advise on getting an assessment of your mother’s needs and should also provide information about any charges which you may incur. The PDS publication Choices: using and understanding health and social care (B70) also provides more information. It is important to recognize that, when your mother comes to live with you, you will be her ‘carer’ and as such are entitled to a care assessment of your own needs. See Chapter 6 Caring for the ‘carers’ – for more information on carers assessments.
What is the difference between home helps and home care workers?
It is difficult to be dogmatic about this and we suspect that there is still considerable overlap between the two roles, but basically home helps assist with general household tasks such as cleaning, cooking and shopping, whereas home care workers tend to concentrate on personal care such as getting washed and dressed (see Chapter 9 for more questions on these topics).
My wife is becoming increasingly disabled with Parkinson’s and I have a heart condition. I have been told that we could be eligible for a community care assessment – what does this entail?
Since April 1993 every social services department has been required by law to have a coordinated system for assessing the
needs of vulnerable people in the community – a community care assessment. In order to request an assessment, all you have to do is to contact your local social services department either directly or through your doctor or other professional worker. (In some areas there is a backlog of assessments, so you may meet delays and some persistence may be required!)
You will then be asked about your needs and, if they cannot be met by the provision of a particular service like home care, but seem rather complex (as they could well be when there are two people with health problems), then an assessor will be assigned to you. He or she will make more detailed enquiries and will coordinate reports from any professionals with relevant knowledge or experience. The aim is to try to fit the services to the client rather than (as often happened in the past) vice versa, and to ensure that you do not have to apply separately to lots of different departments to have your needs assessed.
Two other important characteristics of community care assessments are that the professionals involved are obliged to take account of your views and also to consider (and, if requested, separately assess) the needs of the carer. In your case – and in several others we have encountered – it is not always clear who is caring for whom! If your needs are agreed to be complex and they fall within the criteria established by your social services department, a care manager will be assigned to you (see the answer to the next question for more about care managers).
Every social services department has to publish information about its community care arrangements so you could telephone your local department and ask for a leaflet. These leaflets should also be available in your library, community centre or GP’s surgery.
What is a care manager?
A care manager is the person from social services or Primary Care Trusts who is given the task of putting together, monitoring and reviewing the plan of care agreed after a community care assessment (discussed in the answer to the previous question).
You should be given a copy of this plan and, if you disagree with what is suggested, your disagreement should be recorded in writing.
If you feel that the plan fails to meet some of your needs, it is important to make this clear and to ask that the plan be reconsidered. Do feel free to involve a relative, friend or voluntary worker, if you are in need of moral or practical support.
If none of these people is available to you, ask the social worker or the local Citizens Advice, Council for Voluntary Service (all the addresses and telephone numbers should be in your local phone book) to help you to find an advocate, i.e. someone to help you put your point of view.
My mother is nearly blind and my father has Parkinson’s.
We have asked for a home care worker and someone to help them have a bath but social services say they cannot help. Surely they have to help us?
Without knowing more details, it is difficult for us to judge but it certainly sounds as though you have a case for a proper assessment of your parents’ needs (and yours too in so far as you are a carer). Please read the earlier question and answer about community care assessments. If your mother is almost blind and is not registered as blind or partially sighted, arranging such registration through her local social services should improve her access to several services and benefits. Your parents’ overall needs will depend on how disabled your father is (people with Parkinson’s can be quite capable if their medication is well balanced and they look after themselves in other ways). Home care workers are sometimes forbidden to do housework and, if that is what your parents need, it may be better to try to find someone privately.
The provision of help with bathing from statutory services varies from place to place. In some areas, bathing services are provided by social services, in others by the Primary Care Trust.
Another problem arises because of different definitions of ‘need’.
Your father may feel unable to bathe your mother, even though he is physically capable of doing so, or she may find his help
unacceptable. This kind of psychologically or emotionally based need may not be acknowledged by social services as ‘real’, but if it is a factor in your parents’ situation, you should press your case and see if you can get some support from relevant local voluntary organizations who may know of other similar cases.