Additional Information And Resources

This section includes links to a range of additional information and resources

Please click on the titles to open and close the following information sections.

There are a number of benefits and allowances that may be available to you if you have a genetic disorder or care for someone who does.  You may also be looking for advice on schooling or statementing, or housing or respite.  As a first port of call it’s worth speaking to a member of your social work team or your specialist nurse if you have one, or to your local Citizen’s Advice Bureau.

Citizens Advice Bureau (CAB)

CAB offers free, independent and confidential advice about debt and consumer issues, benefits, housing, legal matters and employment. They provide assistance with claiming welfare benefits, including practical help with filling out benefit application forms. They offer an on-line facility, or advice face-to-face or by phone. Check your local telephone directory or their website to find your nearest branch.

Other useful sources of information and advice include:

Direct Gov

A government website which provides information about a wide range of public services including benefits such as Employment and Support Allowance, Incapacity Benefit, Income Support, Attendance Allowance, Disability Living Allowance and Carer’s Allowance.

There is also a benefits enquiry line that you can call if you would like to speak directly to someone.  Details listed below.

Benefits Enquiry Line (BEL)

0800 882 200 (Monday – Friday, 8.30am – 6.30pm; Saturday 9am –1pm)
Offers information about benefits to people, and their carers, with an illness or disability. BEL can send out leaflets and claim packs. The enquiry line also provides assistance, over the phone, with filling out benefit application forms.

Disability Benefits Helpline

0845 712 3456 (Monday – Friday, 7.30am – 6.30pm)
Call to access information on Attendance Allowance and Living Allowance.

Disability and carers service (DCS) 

The DCS provides information about benefits to people with an illness or disability, and their carers. It is responsible for delivering Attendance Allowance, Disability Living Allowance and Carers’ Allowance. It is part of the Department for Work and Pensions.
It provides the Benefit Enquire Line (as above) to answer benefit enquiries over the phone.
Tel: 0800 882 200 (Monday – Friday, 8.30am – 6.30pm; Saturday 9am – 1pm)

Jobcentre Plus

0800 0 55 66 88 (Monday – Friday, 8am – 6pm)
Jobcentre Plus supports people of working age who cannot work, or who are looking for work. Provides information and is responsible for delivering Statutory Sick Pay, Employment and Support Allowance, Incapacity Benefit, Carer’s Allowance. Also provides additional financial support to people living on low incomes.

Health cost advice

0800 917 7711 (NHS prescription charges) 0845 610 1112 (NHS form line)
Website gives information about prescription charges and getting help with health costs. Download leaflet ‘Help with Health Costs’ (HC11 form).

Prescription Prepayment Certificate (PPC) 

0845 850 0030 (Monday – Friday, 8am – 6pm and Saturday, 9am – 3pm).
Telephone helpline offers information, allows you to order certificate as well as a list of pharmacies able to supply certificates.

HM Revenue and Customs – Tax Credit Helpline

0845 300 3900 (8am – 8pm, every day except Christmas Day, Boxing Day and New Years Day) For enquiries about applications or entitlement to tax credits.

European Health Insurance Card (EHIC)

If you are travelling to a country within the European Union (or Switzerland) you can apply for a European Health Insurance Card (EHIC). The EHIC enables you to get free or reduced cost emergency treatment within the European Union. It entitles you to the same care as people living in another EU country, which could differ from that available on the NHS. EHIC has replaced the old E111 form and can be obtained from your local post office or by telephoning 0845 606 2030.

Specialist travel insurance companies

There are several travel insurance companies that specialise in providing travel insurance for people with pre-existing medical conditions. Myeloma UK has put together an information sheet with the contact details of several of these companies.  To view or download their leaflet go to:

Myeloma is a type of cancer but the companies listed specialise in providing travel insurance for people with a number of pre-existing medical conditions (not solely cancer.)


NHS Choices

The National Health Service information service.

Freephone information lines:
For England – 0845 4647; For Scotland – 0845 4242424; For Wales – 0845 46 47

Disabled Living Foundation

The DLF aims to make everyday life easier for disabled people, older people and their carers, by giving expert and impartial advice about equipment. Equipment centre displays a wide range of useful gadgets.

Helpline: 0845 130 9177 (Mon-Fri, 10am-4pm)

Gene Reviews

GeneReviews are expert-authored, peer-reviewed disease descriptions published on-line. The articles, accessed using their database, include in-depth information on the generics, testing, diagnosis, management, and counselling issues for a wide range of inherited disorders.

Jewish Medical Association (UK)

The Jewish Medical Association (UK) serves as an umbrella organisation for all Jewish healthcare professionals in the UK. Its work includes: providing social and educational activities for Jewish healthcare students and professionals; providing a public forum for the discussion of Jewish issues in medicine and healthcare; and facilitating and developing medical connections with Israel.

Contact details:
Address: Administrator, JMA UK, PO Box 38278, London NW3 4YG

OMIM – Online Mendelian Inheritance in Man

OMIM is a comprehensive and authoritative resource that provides a summary of key scientific research on all know Mendelian disorders and over 12,000 human genes and genetic phenotypes. It is regularly updated and the entries contain extensive links to other resources.

PHG Foundation (The Foundation for Genomics and Population Health)

An independent charity involved in research to achieve the responsible application of biomedical science for health. The site provides easy access to a wide range of in-depth resources, reports, papers and links relating to genetics and its practical application in the UK.