University Hospital of Wales, Social Work Department:
Office hours: Mon –Thurs 8.30 am-5 p.m., 4.30 p.m.on Fridays
Tel.: (029) 2074 2098
Elin Owen (029) 2074 2768
Kit Lewis, Disability Information Officer, (029) 2074 2769
Elin Owen is the social worker dedicated to working with people affected by chronic renal failure. Elin is Welsh speaking.
The social work teams in both hospitals have a duty rota during the day so if Elin is absent, there is usually a social worker available if you need to see one urgently. We also have a Voluntary Disability Information Officer, Mrs Kit Lewis on Mondays and Thursday. She has access to a comprehensive computer database for information on disability and related topics such as benefits (telephone number above).
Renal social workers give advice on a wide variety of issues, especially those relating to dialysis and its problems. With Kit’s help, we have produced a booklet called "Information for Renal Patients and their Families" which can be obtained from us. Although the booklet covers such issues as welfare rights/benefits, telephones, car insurance, mobility, holidays, discretionary funds and, briefly, community care, we have included some of these topics in the following section because they are those you most commonly raise.
We can provide basic information and some assistance with claiming benefits. Other useful sources of information and assistance are Welfare Rights Officers who are often based in your local Social Services Department, Citizen’s Advice Bureaux (CAB) as well as the Benefits Agencies (BA).
Addresses and telephone numbers of local Social Services Departments and Citizen’s Advice Bureaux are available in your local phone book. Local Benefit Agency contact numbers can be found in your local telephone directory. A useful free telephone number for people with disabilities claiming benefits is 0800 882200. The line is open Monday to Friday 8.30 a.m. to 6.30 p.m., Saturdays 9.00 a.m. to 1.00 p.m. Its staff will provide information on your eligibility for benefits and some assistance with completing the forms.
The benefits most likely to be relevant to renal patients are:
· Fares to attend for treatment (only for those in receipt of Income Support). Present your Income Support book at the Cashier’s Office and your fares can be reimbursed. Also, help can be obtained for those on low income.
· Fares for relatives (in receipt of Income Support) to visit patients - complete Form HC11.
· Prescription charges Form FP92A
· Income Support Form A1
· Social Fund Form SF300
· Attendance Allowance Form DS2A
· Disability Living Allowance Form DLA1A
· Invalid Care Allowance Form DS700
· Incapacity Benefit Form SC1 or SSP1
· Severe Disablement Allowance Form NI252
· Disability Working Allowance Form DWA1 (N.B. changes in 1999).
There is a supply of the BA booklet "A Guide to Benefits" MG1.
We can offer a limited service and can also suggest other useful contacts. Most local CAB offer a very efficient, confidential service. Contact numbers can be found in your local telephone directory.
Dialysis patients are encouraged to take much needed breaks. Please ask your haemodialysis or CAPD unit for information and advice. Your Home Dialysis Administrator will need to know your plans for ordering CAPD supplies. We will be pleased to discuss holidays with you especially if funding is a problem.
Booklets are available on Holidays for Dialysis Patients from the National Kidney Federation (tel. 01909 487785) and the British Kidney Patients Association Leaflet on its holiday dialysis facilities (tel. 01420 472021). There are other opportunities for holidays where dialysis patients are welcome such as the Glamorgan Holiday Home in Porthcawl. Please ask us for the details.
See the separate section on holiday destinations.
It is recognised that some people with chronic illness experience financial problems. Main organisations that support renal patients are the Welsh Kidney Patients Association (WKPA), the British Kidney Patients Association (BKPA) and the National Kidney Federation (NKF). There may be other relevant organisations which can help. Please contact us to discuss your application for assistance.
Local authorities have duties to assess and arrange community care services under the National Health Service and Community Care Act 1990 and associated legislation and regulations. Community Care aims to give people who need support the help they require to live as independently as possible. Services which may be arranged include home care, residential and nursing home care, day and respite care, meals in the home, aids and adaptations, counselling and advice, and support to carers.
A Community Care assessment is usually carried out by a social worker from your local Social Services Department and further information on these services can be obtained by contacting them. With your permission, we can make a contribution towards this assessment if requested. The renal social workers can do this for Cardiff patients and Vale in-patients. For those living in Cardiff and the Vale, there is a directory of residential, nursing and domiciliary care services which can be obtained either from us or the hospital Social Work offices.
We often liaise with the hospital and local area occupational therapists for those needing equipment and adaptations at home.
If you are worried about your employment, please do discuss this with us. Many people affected by renal disease find they can return to their former employment once they have started dialysis but for those with difficulties, we may be able to provide a liaison role with employers, explaining to them your needs as a dialysis patient. You may also be eligible for the Disability Working Allowance, which would mean that you could go back onto Incapacity Benefit if you are sick. This is less of a worry for some employers since they do not have to pay statutory sick pay. Sometimes alternative work has to be found so you should find the services of the Disability Employment Officer, based at your local Job Centre, helpful. Various training schemes exist for those wishing to retrain and there are currently a number of other schemes to help people back into work.
There are some leaflets on the work of the Disability Employment Officer in the Social Work Department.
If you have housing problems arising from your chronic illness, first contact your Local Authority explaining your situation. You may then find it helpful to talk to us so that we can liaise with your Local Authority/Housing Association to discuss your needs. Sometimes adaptations can resolve problems, occasionally relocation is necessary.
For those of you who own your own home, we can give you some general information and, where appropriate, liaise with your local area occupational therapist.
Your local Housing Departments should be able to furnish you with information and lists of Housing Associations in your area.
As renal social workers, we understand the pressures on individuals, families and friends living with this chronic illness. Stresses and strains in relationships with partners, children and families can occur. Major life changes can engender feelings of frustration, anger, and depression as well as opportunity for positive changes. Adjustment to the changes of life-style takes time and we are here to offer support, advice and suggestions to help you and your family cope. With your permission, the renal social worker can liaise with the renal psychologist (see Clinical Psychologist). The Welsh Kidney Patients Association also offer a supportive role.
Support for carers is an important part of our role. A carer is someone who has caring responsibilities for another person. S/he may be a spouse, relative or friend, not necessarily living with the person being cared for, and is not paid for caring (other than receiving the appropriate benefits such as the Invalid Care Allowance or the Carer’s Premium for those on Income Support). Under the Carers (Recognition and Services) Act 1995, carers who provide regular and substantial care have the right to their own assessment, normally undertaken by a locally based social worker. We will be happy to liaise with the local social services department to assist with this assessment, often to explain the impact of dialysis on family life. This can be most important as, when arranging care services under the Community Care Act, the needs of the carer to continue providing care must be taken into consideration.
Carers not in full time employment may be eligible for benefits. In the 1998 Budget, tax concessions have been extended to both working men and women with a disabled partner. Please ring your local Inland Revenue Office.
There are other agencies who support carers such as the Carers National Association which may have a branch in your area. Details of the CNA are in the Social Work Office. Your local social services may also have lists of carers’ groups near you which may offer mutual support as well as information and advice.
It is often beneficial for the carer to have time off from caring. This is usually called "respite" and can take the form of either additional support in the home or the person being cared for having a short break away from home: for example, a short stay in one of the private residential or nursing homes in your locality or further afield if you wish. This gives the individual a change of scene and the carer/s the opportunity for rest and recuperation. These independent homes can be approached privately if you wish to fund yourself or through your local Social Services offices which will usually first undertake a community care assessment including a financial assessment.
Cardiff and the Vale Councils have published a directory of residential, nursing and domiciliary care services for 1998 which gives the names and addresses of local accredited registered residential nursing homes as well as tips on choosing a suitable home. There is also a section on where to go for help and advice. Copies of this booklet can be obtained from the hospital social work department. Other social services departments are likely to offer similar information. Addresses and telephone numbers of your local Social Services department can be obtained either from the hospital social work department or from your local telephone book. Please remember that we can liaise on your behalf if you ask us.
Respite care can sometimes be obtained in local community hospitals, your G.P. may have beds in these hospitals so approach him/her for access. Bro Taf Health Authority has produced a "Consumer Guide" on NHS responsibility for continuing care available from Bro Taf Health Authority, Temple of Peace, Cathays Park, Cardiff.
Some voluntary organisations/charities, occupational welfare trusts and trade unions run holiday/ convalescent, or residential/nursing homes and they can offer respite care/holiday breaks. We, or your local Social Services department, may be able to assist in contacting these organisations.
The Glamorgan Holiday Home Hotel Trust on the seafront at Porthcawl provides short breaks for people with disabilities who are in need of a holiday. The facilities and entertainment are designed to take into account needs of disabled or chronically sick visitors. Some local authorities purchase an allocation of beds throughout the year and they can provide funding if you meet their criteria. If you wish to pay for your own stay, you can book a room directly with the hotel manager. Contact us for further information.
N.B. Because of the needs of acutely ill patients, respite care for chronic renal patients cannot be provided on the Renal Ward (B5) in the University of Wales or other wards in the University Hospital of Wales or Cardiff Royal Infirmary.
The Hospital Social Work Departments have access to a wide range of information on Community Services.
For those living in Cardiff and the Vale, this service is available for flexible support for those over 60 on their return home from hospital. The paid workers, called Settlement Aides, assist with tasks such as shopping, cooking, paying bills etc. Visits can be on arranged on the day you are discharged home and on consecutive days or spread over a period of weeks. The service operates 7 days a week from 9 a.m.to 5 p.m. No evening service is available.
There is no charge for this service. If you are in hospital you can ask the nursing staff or your social worker to refer you. If you know you are going into hospital, you can contact them direct or ask your GP to refer you.
Hospital Discharge Service
Age Concern Cardiff and The Vale
91-93 Caerphilly Road
CARDIFF CF4 4AE
Telephone (029) 2052 1125