The local association held its regular support meeting on Saturday 9th February at Thanington Neighbourhood Resource Centre Canterbury.
The meeting was well attended by those living with MND, their carers, association volunteers and friends.
We learnt about the role of Association Visitors, how they can support people with MND and their carers/families.
We also learnt about the role of a trustee of the national MND association. How it was important to support research via funding and to constantly highlight to MPs and the wider media the difficulties and frustration that people with MND have in accessing benefits.
Clive, the local association chairmen gave an update on monies recently raised. He also spoke about how the local association spent its funds.
One of the issues discussed was how to access priority services with the major utility companies, such as being able to have an emergency electrical supply during power cuts so that ventilators will still work.
A variety of homemade cakes were enjoyed by those present.
We had 53 diners at our annual Christmas Lunch at the Yarrow Hotel, Broadstairs on Saturday 8th December.
We had an excellent meal, beautifully served by the staff of the hotel, who as ever were excellent.
During the course of the lunch Katy Styles MNDA Trustee awarded a 25 year award to Hazel Izzard (Watts) for her service to MNDA in East Kent over the past quarter century. Hazel has retired from our group and we gave her a beautiful bouquet in recognition of the incredible work she has done to support people living with MND in East Kent.
As in previous years we had a superb raffle, with prizes being bought along by many diners and we had lots of fun drawing the raffle and the children present certainly had fun collecting various prizes.
We would like to thank the Yarrow Hotel and their wonderful staff, all raffle donors and everyone who attended for making it such a splendid lunch.
We wish everyone a wonderful Christmas and a good 2019.
We will be holding our third Coastal Walk to D’Feet MND on Saturday May 18th 2019.There will be three walks, the first from Whitstable to Broadstairs , the second from Birchington Minnis Bay to Broadstairs and the third from Margate to Broadstairs. All will end with refreshments at The Wrotham Arms, Ramsgate Road, Broadstairs.There is an entrance fee of £10 which includes a tee shirt (collected on the day), training program, detailed plan of walk, and full insurance. Only registered walkers can walk and they must wear the tee shirt for insurance purposes.Each walker is requested to find sponsorship to support people living with MND in East Kent. There is no obligation to raise sponsorship but all support is greatly appreciated.To register for the walk, please visit www.mnda-eastkent.org.uk/walk2019 , complete the form, then follow the link to Just Giving to pay your entry fee of £10. If you intend to set up your own JustGiving page, we are happy for you to do so. Please select MNDA as your charity and then please mention MNDA East Kent in your story to ensure that funds you raise are used for people living with MND in East Kent. Once you have set up your JustGiving Page, please link it to our team at www.justgiving.com/teams/coastalwalk2019/join so we can keep track of the total funds we raise.If you want to make a donation in support but not register please visit our Donations PageShould you experience any difficulties please email email@example.com
The route is shown on the map above. Training programs for the walks, the Walk Plan, sponsorship forms, posters and flyers can be downloaded below:
During the academic year 2017-2018 Dover College elected MNDA East Kent as their Charity of the year. The charity was specifically chosen in memory of Ronnie Philpott, a much-loved member of staff at Dover College and former mayor of Dover.
During the year the school held many events, including a 15 mile whole school sponsored walk, ‘Whiskers for Ronnie’, ‘100 Mile Month’, themed non-uniform days, garden parties, cake sales and a host of other activities and events.
Staff, students and the parents together raised the amazing sum of £10,431.35 for MNDA in East Kent.
MNDA East Kent would like to thank everyone who worked to raise this money and everyone who contributed. This sum will be used to support people living with MND in East Kent, their carers and families.
The Headmaster Gareth Doodes, Laura Walters teacher of Art and Charity fundraising co-ordinator, and several students presented Clive Hudson chair of MNDA East Kent with a cheque on Monday 1st October 2018.
This Sunday marks the 50th anniversary of the prescription charges exemption list. This list has remained largely unchanged since 1968, which campaigners say has resulted in people living with long-term conditions paying high amounts for necessary medication. This week we hear from campaigners and people, in their words, on these costs on why they believe these charges should be scrapped.
Unless you’ve seen your income erode to nothing, you probably wouldn’t get aerated about prescription charges. You might notice when you pop into your doctor’s surgery for a prescription, that the cost has gone up per item (currently £8.80 in England if you are interested). You might think about why some conditions get free prescriptions and others don’t but you probably don’t send much of your time worrying about it.
As my husband and I have recently found out, we are all one illness, condition or accident away from discovering all about prescriptions charge exemptions and the inequity present in the current list.
The list of medical conditions which are exempt from paying for prescriptions hasn’t changed since 10 June 1968. Cancer was subsequently added to the list in 2009 but that was the last change. Why is this a problem? I’m going to use my husband Mark’s long-term illness as an example. The first paper published on Mark’s condition was published in July 1968. This was a whole month after the list of prescription exemptions was drawn up. The list hasn’t kept up to date with medical progress or treatments.
Kennedy’s Disease is a rare disease of the motor neurones. Mark was once fit and active, with a professional career and interested in cycling, swimming and running. He started to limp and we all thought he needed some rest and a bit of physiotherapy. The limp became worse and he started to fall over. He went from using a stick, to crutches and now has a wheelchair to help him move around. His muscles are simply wasting away and his breathing muscles need to be supported by a machine at night.
Kennedy’s Disease is progressive and degenerative so things get worse over time. There is no treatment and no cure. So, no drugs. However, Mark does get frequent chest and throat infections, sometimes needing steroids and antibiotics.
Mark was ill health retired four years ago and I no longer teach. I am now his full-time carer. Our income has fallen off a cliff. We used our savings to adapt our house. We created a downstairs room and a wet room as he could no longer climb stairs. Having a long-term condition means additional expenses. We travel further for medical appointments to see consultants in specialist clinics. Heating and water bills are higher and costs are rising.
In addition to specific illnesses, there is one other category that enables a medical exemption from prescription charges. Anyone with a continuing physical disability which prevents them from going out alone, is exempt. In other words, someone in a wheelchair, or who is unable to go out without a carer, is eligible for free prescriptions.
We didn’t find out about this from any of the clinicians who had diagnosed or continued to support my husband, nor did we find out during his NHS wheelchair assessment. We found out from a member of staff at the Motor Neurone Disease Association (MND Association) * during an unrelated conversation two years ago.
Once we were told this we filled in a simple form, the GP signed it and sent it for processing. The onus is on the person living with the condition to find out whether they are exempt and to complete the form. We do feel that signposting is needed to highlight that this exemption is available. Anecdotally we are aware of people who are eligible for free prescriptions via this category but do not know about it.
And the real kicker – Mark has recently been diagnosed with diabetes as a consequence of his Kennedy’s Disease. His body effectively destroying the delicate insulin producing cells he needs. Diabetes is a condition exempt from prescription charges. He now qualifies for free prescriptions on two fronts. But me, as an asthmatic, and his carer, earning just £64.40 a week in Carer’s Allowance does not. A prescription charge of £8.80 for me is pretty much a whole day’s pay (£9.20). Now that’s a sobering thought.
*The Motor Neurone Disease Association (MND Association) support people with Kennedy’s Disease.
I started my own petition to get unpaid carers valued by government and society as a whole, six months ago. As a carer myself I was dismayed that carers issues went unnoticed, their voices went unheard and the sheer value of their work ignored by both government and society as a whole. I was determined to make carers voices heard.
The petition was a reaction to the government’s continued failure to publish the Carers Strategy it promised all unpaid carers back in 2016. On July 22nd my petition ended with 2,124 signatures. The map below shows the reach of the campaign across the UK as a whole.
Whilst the petition never reached the threshold required (10,000 signatures) to get a response from government it did apply pressure on two ministers and galvanised carers support organisations up and down the country to fight for carers rights. A national Carers Strategy would help to identify and support carers who are facing increasing cuts ro their services and are feeling more isolated and invisible.
Whilst my petition was the main thrust of my campaign, it quickly became clear to me that carers needed to campaign on their own issues. We Care Campaign was launched in April. Over the six months we have held a launch party and we have been mentioned in parliament. We had spoken to journalists, written articles in papers and online. We have appeared in carers magazines and been on radio programmes. We have enjoyed some craftivism (craft and activism) and we have used social media effectively. We hosted a twitter Q and A session during Carers Week for the Shadow Minister for Social Care and we have even identified carers who weren’t identified before.
Just before Carers Week, an annual event to highlight the work of carers, the Carers Action Plan was published. This was a set of 64 actions government had drawn together for carers. Whilst it was cross- department it failed to provide any financial support for carers and much has been left for the Social Care green paper in the autumn.
I was recently awarded a Jo Cox Foundation Scholarship to attend some specialist Campaigns training. This has given me the opportunity to see carers issues in a wider context and enthused me to carry on the fight for a better deal for Carers throughout the UK. Meeting so many other campaigners and hearing their stories was inspiring and I am looking forward to where We Care Campaign goes next.
You can follow us on twitter at @WeAreCarers and if you are a carer yourself, join our We Care Campaign Facebook Group Page for updates and how you can help support our grassroots movement.