NON PHARMACOLOGICAL THERAPIES & SUPPORT FOR MOTOR NEURONE DISEASE

1. NON PHARMACOLOGICAL THERAPIES & SUPPORT FOR MOTOR NEURONE DISEASE Dr F Bhatti Pennine VTS Sept 08

2. Although this presentation is geared towards MND the governing principles are the same for all progressive incurable conditions

3. What we hope to learn Briefly • About complementary therapies • Services that may help • Kinds of support available e.g. financial, benefits, equipment loans, advice etc • Where you can obtain more information

4. Principles • Holistic approach • Informed choice • Do no harm • Sensible /Realistic • Improve symptoms/ sense of well being -Making things more bearable • Support a person not just the disease • Carer’s/ families support - supporting through physical psychological and financial hardship - needs to be dependable

5. What people go through- Some aspects to think about • Physical ( e.g. loss of independence .. I loved my car/ my house. I have had to move to a flat) • Psychological • Psycho-spiritual • Diagnosis- coming to terms with it/its impact on life • Relationships- get stronger vs. weaker • Information overload • Finances (e.g. taxi fares alone are a formidable cost if you are forbidden to/ can’t drive) • Social isolation vs. new people/ friends/ associations • Treatments- choices, effectiveness, side-effects, hope/expectations vs. disappointments, complications, hearsay about them • Coming to terms with your mortality-changes your perspective immensely • Death.

6. A word of advice… • Interventions don’t necessarily have to be very hi-tec ones. Need to think out of the box… Talk to your MDT people….often have great ideas. • Simple examples of little things that can matter: . 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….)

8. Physiotherapy • Building up muscle tone, preventing contractures etc • Chest physiotherapy- aid drainage of secretions • Setting up/maintenance of NIPPV • Needs a senior physiotherapist being involved • Good communication between the MDT members…as well as the hospital and community professionals

9. Complementary Therapies • Merging of ‘conventional medicine’ and ‘alternative medicine’. • Helping to control the symptoms. • Reduce anxiety and stress • Mechanisms: muscle relaxation, improve blood and lymphatic flow and relieve pain naturally by encouraging the production of endorphins • More ‘exotic’ mechanisms e.g. Hypnotherapy, aroma therapy etc.

10. Important 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 • International Guild of Professional Practitioners in Complementary Medicine for advice about qualified practitioners. • Telephone 020 8994 7856 • Email: guild@igpp.co.uk

11. Acupuncture • Tailored to individual’s requirements. • Medical history , lifestyle and diet taken into consideration before treatment is started. • Based on the energy, which flows through channels in the body. To maintain a positive state of health this energy must flow freely and evenly and must be in balance. If the flow is blocked the body can experience stress. • Accessing the channels of energy. Fine needles will be inserted into the channels, which will help to stimulate the flow of energy • Benefits: e.g. . 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

12. Aromatherapy • Aromatherapy can help by offering muscle relaxation, and help with pain relief by stimulating parts of the brain which are linked to feelings and emotions, creating a sense of well being. • Essential oils are used in aromatherapy via vapourisers, massage& bath oils, but never used undiluted. • Cautions- Pts may have altered olfactory sensation, also Mets sites, fragile skin/ bony areas, low platelet counts(<50K?), suspected DVT sites, ascites, TENS machine sites, hyperalgesia, lymphoedema sites with advice Respiratory problems/ allergies while using vapourisers. • Oils of many types-Benzion, Black Pepper, Frankincense, Neroli etc etc • International Federation of Professional Aromatherapists for details of registered practitioners Tel: 01455-637987.

13. Others • Homeopathy • Reiki • Hypnotherapy • Reflexology • Therapeutic touch • Spiritual healing etc All have very variable evidence base National Guidelines for the Use of Complementary Therapies in Supportive and Palliative Care-Hyperlink

14. Interestingly.. The complimentary therapists are usually very good ‘conversation-ists’ or listeners Does this say something about doctors and/or allied healthcare professionals?

15. Statutory Support services From NHS • GP • Specialists/ Neurologists • Neuro-Rehab services- not available everywhere • Physiotherapist • Community/ District Nurses • Palliative Care Team • Speech therapist • Dietician Community Services • Occupational therapist • Social Services

16. Charity Organisations 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: enquiries@mndassociation.orgWebsite: http://www.mndassociation.org b) Scottish Motor Neurone Disease Association Charity organisation in Scotland Tel: 0141 945 1077 Fax: 0141 945 2578 Website: http://www.scotmnd.org.uk/index.htm Email info@scotmnd.co.uk

17. Other kinds of support available-Mainly from MND Association For Health Professionals-Regional Care Development Advisers • have detailed knowledge of the care and management of MND • work closely with local statutory services and community care providers to ensure effective support for people affected by MND • offer support and advice to people with MND and their families • act as educators, facilitators and catalysts • If unsure about the local RCDA for your area please contact the MND Connect Team Tel: 08457 626262Email: mndconnect@mndassociation.org • NORTH WEST - Anna Conlan 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 • NORTH EAST YORKSHIRE - Susan Smith 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

18. MND Connect • For Pts, Carers, health and social care professionals etc • Give information about MND and how to cope with symptoms • Give medical, social, practical and financial information • Offer help and advice • Put you in touch with an Association Visitor, local Branch/Group or Regional Care Development Adviser • Advise on the services the MND Association can offer • Send you leaflets and information sheets • Put you in touch with other appropriate services • Tel: 08457 626262 • Emailmndconnect@mndassociation.org

19. Equipment • Lots available on the NHS. Mainly after assessment by PT/OT might include . Walking aids . Chairs . Hoists . Helps in bathrooms . Rails/ supports . Aids for eating e.g. specially modified cups/ spoons . Suction apparatus etc . NIPPV??

20. Equipment provision by the MND Association • three main ways help can be provided • only where that service is not readily available from statutory authorities, who should always be the first line of resource: 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 • Email: mndconnect@mndassociation.org Following types of equipment could be provided on referral from OT/PT or GP etc. • Electrical riser/recliner armchairs • Portable suction units • Aids to communication – Lightwriters – Computer hardware/software For North Wales, Cheshire, West and East Yorkshire and further north Northern Equipment Loan Service Beech House ,333 Leeds Road Idle, Bradford BD10 9AB Tel: 01274 613030 Fax: 01274 616362 nels@mndassociation.org

21. Care Centres are based in Regional Neuroscience Centres  • have a dedicated MND clinic & dedicated single point of contact for people with MND • have access to a multi-disciplinary team • build up expertise in the management of MND  •  have strong links with local community services& the MND Association • spread expertise across the region undertake clinical research & are the location for clinical drug trials • The Leeds Teaching HospitalsDept of NeurologyE Floor Martin WingLeeds General InfirmaryGreat George StreetLeeds LS1 3EX • Co-ordinator: Linda TuttleTelephone: 0113 3926078Fax: 0113 392 2244linda.tuttle@leedsth.nhs.uk

22. Financial Support Examples of financial support are ( Hyperlinks) • Hospital travel cost scheme • Direct payment for Carers • Council Tax Reduction Scheme • The Social Fund • Income support etc • Carer's allowance etc The MND Association will also consider requests for financial support/funding for anyone with a diagnosis of MND for: • Respite Care • Equipment rental

23. Conclusion . 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.

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