Tracey Thompson, the Regional manager for the Motor Neurone Disease Association in the North of England, attended Council to thank Rotary District 1040 and explain how our money has been used.
Here is her whole presentation;-
Thank you Presentation – Rotary International District 1040
Thank you for inviting me here today. My name is Tracey Thompson and I work for the MND Association as their Regional Manager for the North of England which includes Yorkshire and Humber.
I am thrilled that David Phillips has invited me here today to tell you how your money has been spent and to have the opportunity to thank the Rotary International District 1040 on behalf of the Motor Neurone Disease Association, for your extremely kind and generous donations over the past three years.
The Rotary’s continued generosity and support is greatly appreciated by everyone at the Association, and I would like to pass on our thanks to all those involved in supporting people living with MND, their families and carers in West Yorkshire. In particular I would like to pass our thanks onto Willie Clark and David Phillips who have overseen the partnership with the MND Association
Key Facts about MND
• MND is a fatal, rapidly progressing disease that affects the brain and spinal chord
• MND affects up to 5000 adults in the UK at any one time. There are currently about 170 people living with MND across West Yorkshire
• It attacks the nerves that control movement meaning muscles no longer work
• Around 35% experience cognitive change causing difficulties with decision making, planning and language
• A further 15% show signs of dementia resulting in more pronounce behaviour change
• There is no cure – we are the only national charity in England, Wales and NI focused on MND care, research and campaigning.
• Donated a total of £30,585.10. Made up of:
• 20 individual grants to people with MND, totalling £20,315.10 and
• £10,270 has been spent on the provision of small aids equipment and equipment to help people with MND to bank their voices (I will come back to this in a moment…)
• 20 individual grants: covering the breadth of West Yorkshire including Harrogate, Thirsk, Pudsey, Morley, Leeds, Huddersfield, Todmorden and Shipley to name a few
• Equipment purchased has included stair-lifts, ipads (to help people with MND communicate when they have lost their voice), mobile arm supports, riser/recliner chairs, electric wheelchair, ramps and adaptations to the homes of people with MND
Small Aids equipment
People with MND present with motor weakness and the use of small aids equipment, can enable independence in day to day living activities.
Small aids include things such as –adapted cutlery, pen grips, eating and drinking equipment and dressing aids – they are individually low in cost, but people with MND are often unsure what is available, and can buy items which are not suitable.
Funding for these items can be time consuming and hard to obtain through the NHS or Social Services, yet they can make a huge difference to someone’s quality of life.
Your money has helped purchase a number of Small Aids Kits for use by local Occupational Therapist community teams. This means the Occupational therapist has had the flexibility to provide aids directly after assessment, saving time and hassle for the patient. The small aids enhance functional independence and add to quality of life as the disease progresses.
Such kits have been purchased for 8 community teams across West Yorkshire - Leeds, Wakefield, Huddersfield, Harrogate, Calderdale, Airedale, Bradford, Eddercliffe.
We have had requests from local Speech and Language Therapists for us to fund equipment they could loan out or use as “assessment and demonstration” kit for people whose speech is affected by MND.
Your money has funded the Huddersfield SALT Community Team to purchase laptops and headset microphones to loan out to people who want to do “voice banking”. Voice banking enables someone with MND to record a selection of words and phrases in their own voice so that if speech is affected, they can use their banked voice in a communication aid (rather than a synthetic voice).
Your money has also enabled Airedale SALT Community Team to develop an assessment and demonstration stock of other communication aids, such as iPads, communication soft-wear packages, switches (used to allow someone with limited movement to operate a device by another movement – e.g. by turning head or using a foot).
Marie Curie Hospice Bradford
It is also worth mentioning that you have also provided much funding to the Marie Curie Hospice in Bradford, to support their work with those with MND, their families and carers. The MND Association are currently working in partnership with the hospice and have just funded a specialist MND Coordinator post there.
Finally – a thank you directly from our beneficiaries
A quote from one of the Occupational Therapist’s benefitting from the Small Aids Kits:
‘… it is great to be able to show a people with MND something and let them try it.. before I had to show them tiny photos on my phone…’
A quote from one of the Speech and Language Therapist’s benefitting from the equipment purchased for voice banking
‘…People with MND have been so helped by being able to look at different options, they have been happy to order their own, knowing that it will work for them…’
A quote from a person with MND:
‘…this is a great idea, I don’t know how much money I wasted on different things advertised that turned out to be a waste of money…’
A quote form the wife of a man with MND:
‘…the kettle tipper made my day , my husband could make me a cup of tea for the first time in a year…’
And finally a quote from a man benefitting directly from the purchase of an electric wheelchair funded by the Rotary:
‘..Many thanks for arranging purchase of the Quickie Rumba electric wheelchair for dad, courtesy of The Rotary Club MND fund. He tried it out this afternoon and it's marvellous. Please could you pass our thanks to Willie Clark - I'm sure it will give dad a lot of freedom from being stuck in the house for a long time to come…’
We are in desperate need of volunteers to work with us in West Yorkshire, South Yorkshire, the North East, Lancashire and Cumbria and Greater Manchester – including volunteer Association Visitors who visit and befriend people with MND and their families/carers in their own homes. Full training and support is provided. Please do get in touch if you or someone you know is interested.
Regional Delivery Manager (North)
Mobile: 07541 963528
Landline: 01226 765490