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 • Services that may help • Kinds of support available e.g. financial, benefits, equipment loans, advice etc • Where you can obtain more information
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
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.
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….)
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
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.
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: firstname.lastname@example.org
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
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.
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
Interestingly.. The complimentary therapists are usually very good ‘conversation-ists’ or listeners Does this say something about doctors and/or allied healthcare professionals?
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
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: email@example.comWebsite: 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 firstname.lastname@example.org
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: email@example.com • 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
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
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??
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: firstname.lastname@example.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 email@example.com
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 firstname.lastname@example.org
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
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.