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SUPPORT
One of the principal objectives of the Alkaptonuria Information Centre is to provide support, information and assistance to both patients and carers.
Since the Alkaptonuria Information Centre was launched in January 2008, we have carried out detailed telephone discussions to discover what kind of support Alkaptonuria Patients may need.
Our aim is to act as a bridge between patients and the medical profession; providing an information network which covers issues such as finance, emotional well being, pain management, and carer support. Patients have mentioned these are areas in which they would like more advice so we would like to offer these initial resources as a starting point:
EMOTIONAL WELL BEING
We all know how important our emotions are when managing our health. If we feel depressed, low, sad, isolated or frustrated, it can drain us and leave us feeling exhausted. It can also affect the amount of pain we experience. Studies have shown that when we are happie when we socialise, when we have fun and enjoyment, the experience of pain is significantly reduced.
To boost your emotional well being, there are many counselling services that offer support. You can find out more at the following links:
MIND www.mind.org.uk
The Mental Health Foundation: www.mentalhealth.org.uk
Mental health, psychology and psychiatry: www.psychminded.co.uk
American mental health information: www.mentalhelp.net
Canadian mental health information: www.mentalhealth.com
The Counselling Directory www.counselling-directory.org.uk
These websites also give you practical tips to boost your moods and positivity.
EXPERT PATIENTS PROGRAMME
The Expert Patients Programme CIC runs courses to help people living
with any long-term health condition(s) maintain their health and
improve their quality of life. For more information go to their website www.expertpatients.co.uk or phone 0800 988 5550 for advice.
CARER INFORMATION
For those people who care for an Alkaptonuria patient, help and support is available. The internet is a good starting point and you will find a wide range of practical information and support on www.carers.org and www.carersuk.org
Carers UK also has a network of local branches across the UK. Run by carers for carers, these local branches run coffee mornings, organise outings and give you a chance to share your experiences with other who know what it’s like to care for someone with an illness or disability.
Visit www.carersuk.org for more information on where the branches are and how to become a member.
You could also ask your GP or Citizen's Advice Bureau about other carer centres or groups that might be running locally.
Another useful support site for carers is www.carersfriend.com
FINANCIAL SUPPORT
For advice on the Disability Living Allowance, Incapacity Benefit and other financial assistance, UK residents should visit http://www.direct.gov.uk/en/DisabledPeople/FinancialSupport/DG_10011731
PAIN MANAGEMENT
Many AKU sufferers struggle with pain which can affect your emotional well being, and vice versa. The Alkaptonuria Information Centre has collated 10 simple ways you can try to manage the pain yourself without the use of prescribed medicine:
10 ways to reduce pain without drugs
1. Try a TENS machine
2. Hydrotherapy
3. Heat bags/ Ice packs
4. Distraction- watching something that makes you laugh
5. Relaxation/Meditation/Hypnosis
6. Visit a Pain Management Clinic
7. Use a Biofeedback machine
8. Acupuncture
9. Socialise – talk to others
10. Yoga/Stretching
OTHER USEFUL RESOURCES
As the most common symptom of Alkaptonuria is osteoarthritis, many of our resources were found on www.arthritiscare.org.uk. This is a good site which has a wide variety of free booklets on all of the above categories.
They also have their own discussion forum at http://www.arthritiscare.org.uk/php/phpBB2
Alkaptonuria Yahoo! Groups
You can also join our own Yahoo Groups which can be found by going to Yahoo.com, looking in the groups and typing ‘alkaptonuria’ or ‘alkaptonuria ochronosis’.
You will find two groups there to join: Alkaptonuria Society and Alkaptonuria Ochronosis.
If patients would like further information on any of these issues, or simply would like someone to chat to about how you are feeling, please do not hesitate to call the Information Centre on 0151 706 4387. All calls will be kept strictly confidential.
Health UK Directory
HealthUKDirectory.com is designed to be a one-stop destination for health-related information.
TRAVEL INSURANCE
Many AKU patients may find it harder to obtain adequate travel insurance. A patient from the UK has kindly given us a list of her most recommended companies to use:
Freedom 087 0600 1509
Free Spirit 0845 230 5000
Campbell Irvine 01737 223687
Itssoeasytravelinsurance.com 0845 222 4205/2226
Saga Travel Insurance All the cover you need...plus up to 5% off Single Trip Travel Insurance
MOBILITY SCOOTER INSURANCE
A disabled lady in Wales could lose her house in order to raise enough money to pay compensation and costs associated with an accident involving her mobility scooter. See the full BBC story here.
In the wake of this, the AKU Society asks if mobility scooter insurance is required?
Under current legislations there is no requirement for a user of mobility scooters to hold mobility scooter insurance, in the same way that a car user is legally required to hold adequate insurance. However, users should consider taking out at least third-party insurance to cover any potential claims that could be made should the user cause injury or damage to people or property. Careful consideration should also be given to taking out adequate insurance to cover the scooter itself against damage, theft etc. Scooters can be expensive to purchase and the peace of mind and financial benefits to being insured can be a worthwhile investment.
The DVLA make the following comments with reference to mobility scooter insurance:
"Although it is not a legal requirement, it is strongly advised to have insurance. Suitable schemes are not too expensive and are available to cover your personal safety, other people’s safety and the value of the vehicle."
Types of Mobility Scooter Insurance
The insurance can be divided into two areas:
1.The scooter
2.Third party
The scooter
Cover for the scooter usually protects you against the cost of repairs to, or replacement of your mobility product in the event of an accident. Some policies also cover or will pay towards the recovery costs of getting you and your mobility product home following an accident or breakdown.
Third party
If you accidentally collide into anyone or anyone’s property and you are sued for negligence the insurance should pay for your defence and the resultant damages if you are found to be negligent. Such situations could include hitting a pedestrian, crashing into a car, or causing an accident through negligent driving.
Conclusion
It is worth while holding adequate insurance to cover your scooter and any potential claims against you should any accidents occur. Shop around to ensure you receive a good quote which offers adequate cover.
Here are a few sites that may help you regarding insurance for mobility scooters:-
Fish Insurance
Freephone 0800 012 6329
Regent Mobility
Freephone 0800 011 2960
Disabled Travel Advice
BLUE BADGE HOLDERS - UK ROAD ATLAS
An update edition of the UK road atlas for Blue Badge Holders is now available. The 256-page atlas shows Blue Badge parking bays and accessible services across the UK. It includes information about parking rules for every council in the UK, town centre plans with on-street parking rules, information on petrol stations, accessible toilets, Shopmobility locations, and more. To order go to: www.thepieguide.com/shop or call 0844 847 0875.
DISABLED PERSON'S RAILCARD
Get 1/3 off rail fares using a Disabled Person's Railcard. If you are travelling with a friend they can get the discount too. At £18 for one year card can you afford to be without it? A three year card at £48 is also available from:-
www.disabledpersons-railcard.co.uk
Telephone: 0845 605 0525
E-mail: disability@atoc.org
THE HELPING HAND COMPANY
Based in Herefordshire, England, The Helping Hand Company is the world's single largest manufacturer of Reaching Aids and Litterpickers. The company has been manufacturing these since 1965. Following a change of ownership in 1988, the company has further developed the range of aids for daily living and pressure care products.
Symmetrikit and The Helping Hand Company: In 1996, Symmetrikit became part of the Helping Hand Company, bringing expertise in design & manufacturing of specialist seating for the most dependent clients. Since then, Symmetrikit have worked to develop the practice of 24-hour Postural management, introducing the Symmetrisleep concept in 1999. In 1998 they also introduced their own range of mobile and overhead hoists, which are now marketed through our Symmetrikit team.
Contact: The Helping Hand Company, Bromyard Road, Ledbury, Herefordshire,United Kingdom. HR8 1NS Telephone 01531 635 678 www.helpinghand.co.uk
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