We offer a social work service to all patients attending the renal unit at St Helier Hospital and its satellite units.
Many patients will start dialysis without having come in contact with us prior to commencing dialysis treatment. If some of your concerns can be identified and addressed at an early stage of your treatment pathway, realistic plans can then be made to help you successfully integrate dialysis into your lifestyle with the minimum of disruption.
The sort of issues people normally present with at this time are around:
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financial concerns as a result of becoming chronically ill;
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insufficient means to finance increased expenditure (prescription costs/travel to hospital, childcare etc.);
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employment issues;
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sickness and welfare benefit eligibility;
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accommodation (too small to accommodate dialysis equipment or stores, inability to manage stairs or get in/out of bath);
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care of dependents whilst patient is hospitalised or required to attend the unit;
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needing help with personal care and activities of daily living.
Having identified the problem, we are then in a better position to refer out to the relevant agency within your local authority to ensure that these needs are appropriately met.
Counselling service
The counselling service provided by the renal unit aims to facilitate exploration of emotions and difficulties experienced by patients and/or their families as a result of chronic illness.
To experience disbelief, anger and despair are normal responses to loss and are part of the grieving process. Patients with renal failure have lost a part of their healthy self and need to mourn - as might their partner and family who also need time to come to terms with the effect illness had had on their lives.
Frequently expressed concerns by new and long term dialysis patients are:
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depression;
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concern about death and dying;
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marital and family stress;
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employment concerns;
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loss of independence/role reversal;
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altered body image/low self esteem;
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sexual dysfunction;
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issues around renal transplantation.
Whilst some people prefer to work through their feelings in their own time, in their own way or with their own support network, others may prefer to speak to someone independently. Partners, carers or children may also feel they would benefit from such contact.
The counselling service exists to try to meet this need either within the renal unit setting or by onward referral to a more local counselling centre.
Other areas where counselling is routinely offered are:
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HIV counselling: this is a requirement when patients are wishing to have holiday dialysis in other units, are transferring to satellite units or are waiting to be placed on the transplant waiting list;
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Living donor counselling: where family members, friends, partners or spouses have expressed an interest in donating a kidney to a loved one.
For further information or appointments, please contact either Celia or Joan.
St Helier and Surrey Kidney Patients Association
The St Helier and Surrey Kidney Patients Association is devoted to improving facilities and treatment of our renal patients.
Membership forms and information leaflets, detailing the help which is available to members, are available on the renal unit at St Helier Hospital or from the chairman of the organisation:
Mr D. A. Spensley
L'Alise
Guildford Road
Godalming
Surrey
GU7 3BX
Tel: 01483 42 6276
Other renal charities who can be approached for grants and amenities are:
Please contact either Celia or Joan in confidence if you wish to make an application.
Renal unit HIV antibody testing
Purpose of the HIV test
HIV testing is a routine procedure for patients being prepared for renal transplantation or wishing to holiday at another unit where confirmation of HIV status is a requirement.
Informed consent
Prior to bloods being taken, each patient must be given an opportunity to consider the implications of submitting to an HIV test. For consent to be 'informed' a number of issues need to be considered and discussed as recommended in the Department of Health guidelines for pre-test HIV testing (PL/C/MO/96).
General information
AIDS is caused by a virus called HIV. This virus can damage the body's defence system so that it cannot fight certain infections and other diseases. It cannot be passed on through every day contact.
It is not a test for AIDS, it will only tell you if you have been infected by the virus. Your results and the fact that you have been tested are confidential - between you, the doctor and other staff directly concerned with your care.
It may take up to two weeks before the results are available and these should be fed back to you in person by medical staff. No results should ever be given out over the telephone.
A positive result does not mean you have AIDS - it means that you have HIV and that it can be passed on to other people in certain circumstances.
Patients considered as a high risk would be:
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Homosexual and bisexual men;
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Haemophiliacs;
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Recipients of blood transfusions prior to 1986;
Intravenous drug abusers;
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Anyone having unprotected sex - particularly with people from overseas.
They may wish to be seen by a specialist HIV screening counsellor to discuss specific concerns. Any patient wishing to use this service should contact the GUM clinic on 020 8296 2176.
All other patients will be routinely seen by the renal unit counsellor, one of the consultants or one of the specialist nurses.
Benefit eligibility information and employment issues
Free prescriptions
All patients with a 'working fistula' are exempt from prescriptions charges. Application forms are available from your GP surgery or a pharmacy.
Patients not yet eligible for prescription exemption are advised to purchase a pre-payment certificate which considerably reduces the cost of their medication.
Disability living allowance/attendance allowance (DLA/AA)
There is a strict eligibility criteria for this benefit. If in doubt, contact your local Citizen's Advice Bureau or their central helpline on 020 8405 3552 or the benefits enquiry line on 0800 882200, who will be able to assess whether you meet the criteria and will assist with completion of application forms.
DLA/AA is most commonly awarded on the grounds that the patient needs assistance with personal care of, if under 65, has severe mobility difficulties. Being a renal patient does not automatically deem you eligible.
Unit-based dialysis patients only qualify if 'no member of staff of the hospital or institution assists with or supervises the dialysis' (The Social Security DLA Regulations 1991. Section 7: 2b).
In practice, this should mean that patients are required to set up their own machine, do their own needling, carry out their own observations, take themselves off, strip the machine and so on.
Patients on the home dialysis programme are eligible for DLA.
Employment issues
If you are unable to work as a result of your illness or have been required to reduce your working hours because of dialysis commitments, you may be entitled to benefits and should seek expert advice from Citizen's Advice. Disability Employment Advisors are based at Job Centres and will have a range of jobs and retraining information which could get you back into the work place.
Under the Disability Discrimination Act (DDA), it is unlawful for employers to discriminate against disabled people, in all aspects of employment, for a reason related to their disability - unless this can be justified.
The Act covers things such as:
Under the DDA your employer has a duty to make 'reasonable adjustments' to make sure you are not put at a substantial disadvantage by employment arrangements or any physical feature of the workplace.
Examples of such adjustments could be:
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allocating some of your work to someone else;
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transferring you to another post or place of work;
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being flexible about your hours;
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providing training or retraining etc.
Welfare benefit checks
Your local Citizens Advice Bureau or the Freephone benefit helpline on 0800 882200 will carry out a full benefit check to determine eligibility and will assist with claim form filling.
Travel expenses to come to the renal unit
Patients on Income Support, Job Seekers Allowance, Pension Credit, Working Tax Credit or Child Tax Credit who do not use hospital transport may be eligible for reimbursement of public transport fares or car mileage expenses.
Relevant application forms can be obtained from the cashier at St Helier Hospital. Proof of benefit eligibility will be required together with petrol or transport receipts.
The National Kidney Federation runs a helpline for patients and carers on 0845 6010 209.
Renal charities
It is recognised that renal patients often face loss of earnings and increased costs as a result of being dialysis dependent.
The following charities can be approached for grants and amenities:
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The British Kidney Patient Association (BKPA);
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The National Kidney Research Fund;
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St Helier and Surrey Kidney Patient Association.
Please contact Celia or Joan in confidence if you wish to make an application.
Insurance advice
Car insurance
The DVLA and the patient's own insurance company should be informed of any significant changes in the patient's health. This includes commencement of dialysis and/or date of transplant. They do not restrict the period of the licence but keep the information on file in case it is ever requested by a third party insurance company.
Contact the Drivers Medical Group, DVLA, Swansea, SA99 1TU on 0300 790 6806 or by fax 0845 850 0095 or email eftd@dvla.gsi.gov.uk. Further information is also available from www.direct.gov.uk/motoring.
If an insurance company is not advised of the patient's dialysis status, they may refuse to meet any claims which are made.
Life cover and mortgage advice
Contact the following for up to date information:
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BKPA: 01420 47 2021
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NFKPA: 01909 48 7795
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NKRF: 01480 45 4828
Holiday insurance
It is important that you don't book your holiday until you have taken out holiday insurance which covers you for a pre-existing medical condition. A full list of companies has been compiled by the NKFPA and it has been noted that Mars Insurance Brokers (tel: 020 8366 2222) specialise in pre-existing conditions.
Stackhouse Polland (insurance brokers to the BKPA) offer travel, home and motor insurance and can be contacted on Freephone 0500 720000. Remember to mention BKPA when you call.
Two other things to remember are:
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In Europe, in addition to the correct holiday insurance, you should also carry a completed E111 form.
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If you are on a transplant waiting list, many insurance companies will assess you as being on a 'hospital waiting list' awaiting an operation which may affect your holiday insurance premium.
