Category Archives: Awareness

Saltwood Boxing Day Fun Run 2018

The Saltwood Run has been held for many years on Boxing Day.  Large numbers of runners turn out to run off some of the Christmas dinner.

North Kent MNDA have been a recipient of funds from the run for many years.  We have received a cheque for £2,500.00 from funds raised at the 2018 run.

Thanks to Ross Sansom and the team organising the Saltwood Run and to all the runners who efforts over many years have raised substantial funds to support people living with MND in East Kent.

Many thanks also to the Members of Rotary Club of The Channel for their continuing support over many years.  We received a cheque for £250 for the run in 2018.

Huge thanks to everyone involved in the Fun Run:  The Runners, Ross Sansom and his team, Rotary Club of The Channel and everyone who donated. People living with MND in East Kent and MNDA East Kent are very grateful for your continuing support.

We Care Campaign wins national campaigning award from UK Parliament

On Tuesday 2nd April, Katy Styles and the We Care Campaign team arrived at Westminster to collect the UK Parliament’s Digital Campaigner of the Year.

2019 marks the second year of the Your UK Parliament awards. The winning entries were chosen by the Speaker of the House of Commons, and a judging panel of MPs, Peers and independent judges. All of the winners attended an awards ceremony hosted by the Speaker in the Houses of Parliament.

The Rt. Hon John Bercow, Speaker of the House of Commons, said:

Katy Styles ©UK Parliament_Mark Duffy

“There is nothing more inspiring than hearing how these winners used so many innovative ways to get people more involved and connected with UK Parliament. This year’s awards have shone a light on this amazing work – and will hopefully encourage others to join the campaign.”

We Care Campaign is an ongoing campaign to get a better deal for the UK’s 7 million unpaid carers. It is led by carers, for carers. Carers are a hard to reach group as they often feel too tired, too isolated and disempowered to take part in campaigning.

We Care undertook 3 digital activities. Katy ran an e-petition calling on government to publish a Carers’ Strategy. The petition obtained 2,124 signatures. We Care also encouraged unpaid carers to take part in a twitter #AsktheMinister question session to the Minister for Social Care, Caroline Dinenage. We then used our own @WeAreCarers account to host Barbara Keeley, the Shadow Minister, enabling carers to ask more than one politician the same questions during Carers Week. We Care organised a Valuing Carers digital event where decision makers, carers and the cared for posted messages of support for unpaid carers during Carers Rights Day.

We Care Team with Mr Speaker Bercow ©UK Parliament_Mark Duffy

We Care Campaign’s activities made a massive difference and impact on our target audience of unpaid carers who took part in our campaign actions. Individual carers took part in digital actions which helped organise a real grassroots campaign. We Care worked hard to utilise every contact made, by replying to every single contact individually. An unpaid carer speaking of one of our digital takeovers said, “Normally we get a bit of cake and bunting for Carers Rights Day. This is so much more than that. It’s not been done before.” We equally made an impact on individual decision makers, within parliament and beyond and have built a strong network, enabling us to reach more carers in 2019.

Katy Styles who led the campaign said,

“We Care want to thank you so much for a special day in Parliament. Engaging with Parliament at this time in a positive way has never been so important and we have loved playing a small part in this.” fff

Support Meeting 9th February 2019

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.

3rd Coastal Walk to D’Feet MND May 18th 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 webmaster@mnda-eastkent.org.uk

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:

24 mile walk training programme download PDF

11 mile walk training programme download PDF

Walking Route and Plan download PDF

Sponsorship Form download

Poster download

We  thank our sponsors, with whose help we are able to raise substantial sums to help people living with MND in East Kent.

 

Pearson Whiffin Charity Football Competition

On Saturday 2nd June the 7th annual Pearson Whiffin Charity 5-a-side football tournament took place at KSports Cobdown in Ditton, Aylesford. 

Competition in progress

The day was overcast but dry, ideal conditions for playing football.

48 teams played several matches each seeking to win the coveted Champions Cup, the cup was won by Macklands with ISS winning the Consolation Cup.

Macklands – Winners Champions Cup 2018
ISS – Consolation Cup Winners 2018

The chosen charity for the day was MNDA in Kent, with all proceeds to be shared amongst the branches and groups in Kent.

Pearson Whiffin organisers and MNDA volunteers

Through various activities on the day and raffles, Pearson Whiffin raised over £5000 to support people living with MND in Kent.

MNDA East Kent warmly thank Rob Pearson and his team for organising this wonderful event and raising funds to support people living with MND in Kent.

Please support our sponsors by visiting www.pearsonwhiffin.co.uk for all your recruitment needs.

http://www.pearsonwhiffin.co.uk

Prescription Charges Exemptions and Iniquities.

The article below was published in The Huffington Post – and is best seen by following this link https://www.huffingtonpost.co.uk/entry/since-my-husbands-diagnosis-with-kennedys-disease-our-income-has-plummeted-prescription-charges-only-add-to-this_uk_5b1142f3e4b0d5e89e1ef965?guccounter=1 

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.

Katy and Mark Styles

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.

We Care Campaign for unpaid carers petition closes.

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.

https://petition.parliament.uk/petitions/209717

 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.

Katy Styles

 

 

 

 

 

 

AGM Conference at East Midlands Airport, Derby 13/14 th July 2018

The MND Association AGM was extra special for me this year as it makes a full year since I was nominated to be a trustee for the Association.  I have now done a full round of Board Meetings, Committee meetings and project task group meetings.  

Why go to the AGM? 

The AGM is a place to meet up with old and new friends, other volunteers and staff from our MND community, together with exhibitors and speakers.

I find that there is always something new to learn, whether it is from another Branch or Group, or finding out about the research being done, or the equipment on offer. One big hit was the virtual reality headsets which Mark, my husband tried out. One was a general virtual reality demonstrating all of its features including being in a helicopter, in a hot air balloon and giving lots of different views and landscapes. He particularly enjoyed the car racing around the Le Mans circuit. 

I attended a workshop around Legacy Fundraising which was one aspect of the Association’s work that I knew little about. 

Even if you can’t attend to you can follow the event Live on Facebook and it is always nice hearing the messages read out from those back at home, watching the event unfold. Here’s the link to this year’s AGM and research speech. https://www.mndassociation.org/videos/

The afternoon speaker was Professor Martin Turner who was there to speak about his bio -marker research at Oxford. Something close to my heart. I have been part of that research, sitting in multiple scanners for many hours as a healthy control for Professor Turner’s research. I was very interested to hear how that particular research was going.  

I always come away thinking how much the Association has done in the previous year, as highlighted by the Impact Report and I am always grateful to our many supporters, fundraisers, volunteers, campaigners and staff who all help get us there. The Impact Report is here https://www.mndassociation.org/about-us/a-strategic-framework-for-the-future/impact-report/

 Next year maybe I’ll see you there.

Katy Styles, Trustee MNDA and MNDA East Kent

KM Dragon Boat Races

On Sunday 1st July, MNDA East Kent entered a team in the KM Charity Group Dragon Boat Race. Our team was made up of members of the Lawrence family from Folkestone. The team were entered into three races, impressively winning two and coming second in the third race.

In our final race, we were pitched head to head with the team from MNDA Mid Kent,   who were the fastest team on the day.  It was a very close race, we managed to beat Mid Kent but due to their faster times in earlier races they went through to the finals. Congratulations to the team of MNDA Mid Kent!