Support and benefit services
Being diagnosed with a kidney disorder can be difficult to come to terms with, and may mean some significant changes to your lifestyle. If some of your concerns can be identified and addressed at an early stage of your treatment, we can make realistic plans to help you successfully integrate dialysis into your lifestyle with the minimum of disruption.
- The sort of issues people normally raise at this time are around:
- financial concerns as a result of becoming chronically ill
- insufficient means to finance increased expenditure (prescription costs/travel to hospital, childcare etc.)
- employment issues
- sickness and welfare benefit eligibility
- accommodation (too small to accommodate dialysis equipment or stores, inability to manage stairs or get in/out of bath)
- care of dependents whilst patient is hospitalised or required to attend the unit
- 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 your needs are appropriately met.
Travel expenses for journeys to the unit
Patients on benefits 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.
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 (DLA)
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.
Patients on the home dialysis programme are eligible for DLA.
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.
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 Spensley
Tel: 01483 42 6276.
Other renal charities who can be approached for grants and amenities are:
- The British Kidney Patient Association (BKPA) (opens in a new window)
- The National Kidney Research Fund (opens in a new window)
Please contact either Celia Eggeling, Senior Social Worker and Counsellor on 020 8296 2940 or Joan Shonfeld, Social Worker Assistant on 0208 296 3699.
The counselling service provided by the renal unit aims to help patients with the emotions and difficulties experienced as a result of chronic illness.
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:
- concern about death and dying
- marital and family stress
- employment concerns
- loss of independence/role reversal
- altered body image/low self esteem
- sexual dysfunction
- 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:
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;
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 Celia Eggeling, Senior Social Worker and Counsellor on 020 8296 2940.
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:
- application forms
- interview arrangements
- proficiency tests
- job offers
- terms of employment
- promotion or training opportunities
- work-related benefits (such as access to recreation or refreshment facilities)
- dismissal or redundancy.
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:
- allocating some of your work to someone else
- transferring you to another post or place of work
- being flexible about your hours
- providing training or retraining etc.
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 firstname.lastname@example.org. Further information is also available from www.direct.gov.uk/motoring (opens in a new window).
If an insurance company is not advised of the patient's dialysis status, they may refuse to meet any claims which are made.
Life coverage and mortgage advice
Contact the following for up to date information:
National Kidney Federation: 0845 601 02 09
Kidney Research UK: 01480 454828
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:
- In Europe, in addition to the correct holiday insurance, you should also carry a completed European Health Insurnace Card (EHIC) form.
- 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.