While you wait for a transplant you may be able to continue working or you may be too unfit to work. A family member(s) may have to adjust working hours or give up work to look after a transplant patient. It's important to talk to your employers about your particular situation and needs. It may be possible for them to make extra provision to enable you to stay in the workplace while you wait of your transplant or that of a loved one e.g reduced work schedules; provision of disabled parking; assistance with lifting etc and plan for your return to the workplace. The Equality Act 2010 legally protects people with disabilities or long term health conditions from discrimination at work. By law employers must make 'reasonable adjustments'.
As a patient carer refer to any work guidelines or policies your company or workplace might have so you can be aware of your rights. Your employer or company may have an occupational health therapist who can advise you.
Falling seriously and terminally ill and being unable to work can place a big stress on personal and family finances. It's advisable to check through any work pensions you may hold to see if there are any ill health entitlements and also to check carefully any insurance policies held. Sometimes companies provide an 'ill health pension" and in some circumstances these may be enhanced. Insurance companies can pay out a lump sum or continue mortgage payments if you can meet their requirements.
This may all feel very daunting especially when you are unwell, but it's important to act fairly swiftly as sometimes there are time limits on claims which are set from the date of diagnosis. Insurance policies can include some provision for parents in the event of a child becoming sick. There are organisations and people who can help to support you with completing paperwork and give advice on employment law and state benefits.
A first source of help may be your hospital's social worker, who can assist with advising you on money and work related matters and can help fill in any forms and applications for pensions, insurance policies and state benefits. They can also put you in touch with other relevant organisations who can help. They can be helpful in liaising between you and your doctors to gather the necessary documentation that you and your family require, as it's important to gather as much medical evidence as possible to support any claims. You can ask your transplant coordinator to arrange an appointment.
Some useful websites for work related and money issues:
The Citizens' Advice Bureau - assistance and information on workplace rights and problems www.citizensadvice.org.uk
Turn2us - information and resources on welfare benefits (useful 'benefits calculator' and 'grants search' tools), charitable and other support services. www.turn2us.org.uk
Disability Rights UK - help and advice on independent living; work and education; factsheets and PIP guides www.disabilityrightsuk.org
Carers UK - help and advice with Carer's Allowance, benefits and practical support www.carersuk.org
Department for Work and Pensions -GOV-UK - information, guidance and application links for benefits www.GOV.UK (click on benefits)
Contact a family - advice and information for families of disabled children contact.org.uk