General

INFORMATION – LAST UPDATED 2/4/13

 

Fact Sheets

Download HDA fact sheets, booklets & forms from the HDA web site : http://www.hda.org.uk by clicking here

The HDA Fact Sheets are available online in PDF format. To download, view and print out the HDA Fact Sheets you will require a copy of Adobe Acrobat Reader on your computer. Acrobat Reader is available for free and can be downloaded from the Adobe web site. You can also obtain printed copies of these fact sheets by contacting

Huntington’s Disease Association

Suite 24 Liverpool Science Park

Innovation Centre 1 131 Mount Pleasant

Liverpool L3 5TF

Tel : 0151 331 5444 Fax : 0151 331 5441                     email: info@hda.org.uk

 

HD Message Board

The HD message board is a forum where people can share experiences. You can register via www.hda.org.uk by clicking here

Disability information service

This disability information service is provided by Devon County Council and includes many helpful bits of information – Click here

Useful Web Sites

HD information - click on links below

– hd lighthouse

HD Society of America 

European HD consortium

European Huntington’s disease network

-UCL Huntington’s disease research

Carers information  – Click on links below

nhs UK Carers Direct

carers.org 

 

Social Services

It is very important to be registered with Social Services as this provides a pathway for a number of benefits and various forms of assistance like Home Care, Day Centres, respite breaks, blue badge to help with car parking etc. Contact your local Social Services office and ask for an assessment for both the person you are caring for and yourself as a carer. It is also through your care manager that you can get a referral to an occupational therapist who can arrange for adaptations to your home and the supply of disability equipment.

To access Social Services at any location indicated below – click on link

Exeter

Torquay  

Ilfracombe  

Plymouth 

Specialist Services

Referrals can be made through your GP for speech therapy, physiotherapy and the services of a dietician. There may also be other facilities available like swimming for the disabled.

Prescription Charges

HD is not one of the conditions listed for exemption from prescription charges. However, you can apply for exemption for people with a continuing physical disability (which means you cannot go out without help from another person). Get form FP92A from your doctor and apply for an exemption certificate.

Occupational Benevolent Funds

Many employments have a benevolent fund which offers one off payments for something like a piece of equipment or possibly offers a regular grant to help with a change in circumstances. You can make enquiries through the OBFA on 01701 651777.

Motability

Motability enables disabled people to obtain a new car, powered wheelchair or scooter. For enquiries about the scheme, call customer services helpline on 0845 456 4566.

Tripmobility

This company can provide equipment such as hoists, profile beds, wheelchairs, commodes and many other items throughout the UK for a single day or long term hire. The service is especially useful if you are going on holiday, or do not want to have problems associated with getting equipment into your vehicle, or if you wish to offer a disabled guest appropriate facilities whilst staying with you. Ring 01977 618043 or visit www.Tripmobility.com

London Congestion Charge

With a disabled badge you can register up to two cars so that the London Congestion Charge is not payable. On line, you can even change the car to which it applies, either temporarily or permanently.

Toilet Facilities

You can get a key that will open any disabled WC in the UK. Apply to your local council offices. There is a small charge for the key but you get to use nice clean loos.

Key Information re Hospital /Nursing Home Admissions

Because HD is relatively unknown, head office has produced an information sheet for hospitals and nursing homes to use at the time of admission of an HD patient. It includes a short guide and prompts the questions that ought to be asked about the patient. In practice, it would be a good idea to get a copy from head office prior to admission and ensure all the information required is available.

Holidays and Breaks

Vitalise provide holidays for disabled people and carers. For details: telephone 0845 345 1970 or look at www.vitalise.org.uk. Holidays With Help provide respite care breaks for disabled people and their carers. For information: ring Kailua on 01483 763626 or Rosemary McIntyre on 020 8390 9752 or look at www.holidayswithhelp.org.uk.

Theatre Guide

This guide lists most of the London theatres and gives information about access generally.  e.g. where there are steps, and how many. Where there are wheelchair spaces or transfer seats the position is indicated.  Sometimes it is necessary to get access via a different entrance.  Many of the theatres give a discount (or free seat) for a carer.  The Royal Opera House is especially good for this for those interested in ballet and opera, but it is necessary to register first  (on something called the access list) and to be able to provide evidence of disability to get on the list. The Festival Hall also has a scheme but the Hall is being revamped at the moment. To get the (free) guide write to : The Society of London Theatres, 32 Rose Street, LONDON, WC2E 9ET Tel : 020 7557 6700 The book itself has quite a lot of other information which could be useful to disabled people.

See Tickets

This organisation sells tickets to most shows and concerts in London. For people with disabilities, they offer special rates and do not need proof of disability. Ring 0207 087 7960-Option 1.

This organisation sells tickets to most shows and concerts in London. For people with disabilities, they offer special rates and do not need proof of disability. Ring 0207 087 7960-Option 1.

Personal details – Good housekeeping

Jargon Buster

Some of the most commonly used words and phrases and what they mean – click Jargon Buster article pdf

Help with travel / hospital / doctor visits?