NON PHARMACOLOGICAL THERAPIES & SUPPORT FOR MOTOR NEURONE DISEASE Dr F Bhatti Pennine VTS Sept 08 Although this presentation is geared towards MND the governing principles are the same for all progressive incurable conditions What we hope to learn Briefly About complementary therapies
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Dr F Bhatti
Pennine VTS Sept 08
-Making things more bearable
- supporting through physical psychological and financial hardship
- needs to be dependable
Need to think out of the box…
Talk to your MDT people….often have great ideas.
. A fan to ease sensation of breathlessness
. Saline gargles to cleanse the mouth
. Foam sleeves on the legs of glasses to prevent them from slipping
. Cutlery/ Cups with big handles to ease gripping
. Velcro instead of buttons/ shoe laces
These can make a huge difference to the quality of life ,independence& self esteem. ( e.g. I’d find it embarrassing to go see somebody with food staining front of my shirt or buttons undone because I simply couldn't….)
Plenty of non registered self-styled practitioners with very official sounding titles and regulatory bodies, which in fact have no standing and hence no regulation
Practitioners in Complementary Medicine for advice about qualified practitioners.
. in increased energy & vitality,
. greater enjoyment of life
. more restful sleep.
1.British Acupuncture Council :UK's main regulatory body for the practice of traditional acupuncture
http://www.acupuncture.org.uk/ Tel: 020 8735 0400
2. The British Medical Acupuncture Society :(registered charity) provides information on local registered specialists.
http://www.medical-acupuncture.co.uk/ Tel: 01606 786782
Respiratory problems/ allergies while using vapourisers.
All have very variable evidence base
National Guidelines for the Use of Complementary Therapies in Supportive and Palliative Care-Hyperlink
The complimentary therapists are usually very good ‘conversation-ists’ or listeners
Does this say something about doctors and/or allied healthcare professionals?
a) MND Association
This charity organisation was formed in 1979 by a group of volunteers who wanted to co-ordinate support, guidance and advice for people affected by the illness.
Its national support and advice service is called MND Connect
PO Box 246,Northampton NN1 2PRTel: 01604 250505Fax: 01604 624726/638289Email: [email protected]: http://www.mndassociation.org
b) Scottish Motor Neurone Disease Association
Charity organisation in Scotland
Tel: 0141 945 1077
Fax: 0141 945 2578
Email [email protected]
For Health Professionals-Regional Care Development Advisers
Tel: 08457 626262Email: [email protected]
Lancashire; Cumbria, Bradford, Airedale and South Cumbria, Craven, Preston (Postcodes: BB, BD (except 4,11,19), FY, LA, L39-40; LS29, OL13, PR 1-7, WN8)
Tel: 08453 751841
Leeds, Hull, Richmond, Harrogate, Wakefield, Ryedale, Selby, Scarborough, Hambleton, York, UA within North Yorkshire and East Yorkshire; (Postcodes: DL 6,7,8,9,10,11, DN14, HG, HU, LS all except 29,WF all except 12,13)
Tel: 08453 751822Fax: 0113 267 2393
. Walking aids
. Helps in bathrooms
. Rails/ supports
. Aids for eating e.g. specially modified cups/ spoons
. Suction apparatus etc
Equipment provision by the MND Association governing principles are the same for all progressive incurable conditions
o Equipment Loan
o Funding of rental (particularly for short term needs)
o Purchase of small items
If in doubt as to which route is most appropriate, advice can be sought from
MND Connect Team telephone: 08457 626262 or
Following types of equipment could be provided on referral from OT/PT or GP etc.
For North Wales, Cheshire, West and East Yorkshire and further north
Northern Equipment Loan Service
Beech House ,333 Leeds Road
Tel: 01274 613030
Fax: 01274 616362 [email protected]
are based in Regional Neuroscience Centres
Linda TuttleTelephone: 0113 3926078Fax: 0113 392 [email protected]
Examples of financial support are ( Hyperlinks)
The MND Association will also consider requests for financial support/funding for anyone with a diagnosis of MND for:
. Lots of help available provided you know where to look.
. Generally the charity organisations are very good on providing good practical advice which we as health professionals might not be aware of owing to their specialist expertise about it.
finish governing principles are the same for all progressive incurable conditions