Category Archives: Campaigns

Campaigns are crucial to getting our message about Motor Neurone Disease to Government, health organisation and the public.

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

MND Patients Meeting at Westminster – 28th February 2018

Many MND patients, families and friends plan to meet  at 11 AM on Wednesday 28th February in Parliament Square directly opposite the Houses of Parliament.

The objective of the meeting is to get the Department of Work and Pensions to cease reassessment of patients with MND for  Employment Support Allowance (ESA).

This is an objective every member of our association desires but as ever there are many ways to go about securing our objectives.  It is useful to read Sally Light’s blog on the way the association is approaching the objective.  Follow this link to read Sally’s blog

Background to MND Patients dispute with the Department of Work and Pensions Motor Neurone Disease (MND) Is a progressive and terminal neurological condition in 100% of cases. It takes away an individual’s ability to use their hands, arms and legs, to talk and swallow and ultimately to breathe. 50% of those diagnosed die within two years of diagnosis, 33% within 1 year.
Employment Support Allowance (ESA) is a benefit to replace the income you lose when a disability prevents you from working. Given that recent research showed that life for people living with MND costs on average an extra £12,000 per year (and that is before loss of earnings), ESA is a vital income supplement.
To receive ESA people must undertake a “work capability assessment”. This is not linked to a diagnosis. However, over 90% of people living with MND who undertake the “work capability assessment” are deemed not fit to work and go onto the higher rate.
People receiving ESA are subject to reassessment. But MND NEVER improves. It only gets worse.
So there is absolutely no need to reassess. The process causes unnecessary stress to individuals and their families who should be focusing on the days they have left rather than fighting the system. In addition, it is a waste of public money.
From October 2017 NEW claimants will not have to be reassessed once they are on the higher rate.
However, an estimated 600 people living with MND already on higher rate ESA remain subject to reassessment. This is CRUEL and UNJUST and the practice must be ended.
@MNDPatients are angry at.…
1) the TIME this has taken to be resolved . Given the nature of the disease many will have passed away since a October 2016 promise by the then Minister for Disabled People, Penny Mordaunt MP.
2) the latest Department of Work and Pensions (DWP) “excuse” for the delay. They blame it on “complex operational and systems issues” for which, clearly, people living with a terminal and progressive condition cannot be to blame. The burden MUST be taken away from MND patients.
Our RECOMMENDATION is that a “work around” is found without delay. Rather than complete yet another long form, why can’t affected people simply contact their DWP office, tell them they have a diagnosis of MND and supply contact details for a health professional – GP, neurologist, specialist nurses etc to confirm their diagnosis. The estimated 600 is by no means a huge number in the universe of ESA claimants. The stress on MND patients will be immediately reduced and civil servants need not trawl through 600 long forms but simply make brief telephone calls or send short emails to marry up the work capability assessment with the diagnosis.
For similar reasons, we are also demanding that similar exemption criteria are applied to reassessments for Personal Independence Payments (PIP)/Disability Living Allowance (DLA) for those with terminal, progressive diseases including MND.

Carers Strategy Petition

Carers were asked to contribute to a call for evidence for a Carers Strategy in early 2016. Many carers and carers organisations filled in the questionnaire and wrote reports on the issues for carers and how to solve them.

Katy Styles, Rosie Duffield MP and Judy Keay at MNDA Parliamentary Reception

Everyone expected the Carers Strategy to be published at the end of 2016. We waited throughout 2017. An election happened. The Minister changed. We continued to wait. By October I decided that I needed to do something to get government talking about the Carers Strategy again. I was quoted twice in parliament as being very annoyed that carers were still waiting and our voices were unheard. The Minister then made an announcement in November that there would be an Action Plan. That Action Plan was due in January. It never came. We were on our next Minister.

I created a petition on the Government’s own petition website to get Government to publish the Carers Strategy. I even took an online course with UK Parliament to learn how to do this. My petition went up on the website on 22nd January. It runs for 6 months. To get a response from Government I need 10,000 signatures. To get a debate I need 100,000 signatures. But no matter how many signatures this petition attracts it has got people discussing carers and the lack of a properly thought through strategy.

So far Kent Carer Support Organisations have supported this petition through their networks, as have many other carers organisations throughout the country.

Have your say

MPs have shared the petition on social media and there have been messages of support and encouragement.

Why did I do this? As someone who meets many carers it struck me how few knew their rights, few identified themselves as carers and few were claiming benefits they were entitled to. A proper strategy should address these issues.

If you feel you can support this, please click on the link and sign up and share. Thank you.
https://petition.parliament.uk/petitions/209717

Katy Styles – Carer, MNDA Trustee and MNDA East Kent

Silence Speaks at QEQM Hub

Silence Speaks is the Association’s activity to raise awareness of speech loss in over 80 % of people living with MND. During October people take up the challenge of raising awareness of the issue by running a variety of events, these include sponsored silences, silent discos, silent quizzes and lots more.  

Chrissie Batts, East Kent Hospital Trust’s Specialist Nurse undertakes outreach to hospital

Katy Styles Mark Styles Chrissie Batts and Judy Keay

staff at all three trust hospitals to raise awareness of the support people living with MND will need with their carers should they attend or stay in hospital. 

As part of this programme, Chrissie together with Judy Keay, Association Visitor Coordinator and Katy and Mark Styles went to the Queen Elizabeth the Queen Mother Hospital in Margate on Friday 20th October to explain about motor neurone disease but with the added pressure of doing this silently. These awareness activities are held weekly within all three hospitals and staff from all departments are encouraged to pop in and see the presentations on those days.  

Chrissie Batts Mark Styles and Judy Keay

Together Chrissie, Judy, Mark and Katy had downloaded type to speech apps on iPhones and iPads, creating key phrases to explain what we were doing and what help people in hospital with MND many need. We used pads and pens, laminated letter sheets and pre-printed leaflets from the Association.  

We met staff from all different departments with very different duties who were all very interested to learn about speech loss in MND. Staff said that as we were not speaking it made them not want to speak. Others commented that it was really important to highlight this issue and asked what they could do to support someone with MND.

During the session, Katy Styles awarded Chrissie with an MND Association Extra Mile Award

Sally Smith and Chrissie Batts

for her dedication to supporting the people living with MND in East Kent. Extra Mile awards are awarded to staff who have gone above and beyond to support people living with MND, their families and carers. Katy had pre-recorded a short speech to explain to Chrissie why she was receiving the Award. The Chief Nurse, from the East Kent Hospital University and Foundation Trust, Sally Smith attended the presentation and congratulated Chrissie.

 

 

All Party Parliamentary Group on MND Reception

Together with branch and group members of the MND Association from around the country, Clive Hudson chair of the East Kent Group and Judy Keay, Association Visitor Coordinator attended the Parliamentary Reception in London on 17th October, 2017.

Katy Styles Rosie Duffield MP and Judy Keay

Also attending were Katy and Mark Styles, campaigners for East Kent Group. At the Parliamentary Reception, the All Party Parliamentary Group (APPG) on MND launched their report on PIP – Personal Independence Payments. The report highlighted the problems that people living with MND are having with reassessment of their benefits.  

Powerful speeches were given by Chris Evans, the Vice Chair of the APPG on MND, by Rob Owens a person living with motor neurone disease, Patron of the MND Association Charlotte Hawkins who spoke about her father who had died from MND and the need for equipment and benefits to be timely. Finally, the Minister of the Disabled, Penny Mordaunt spoke about her department and what it was doing to change how information on people was gathered and used. 

Many people had emailed their MPs to attend the event, over 50 MPs and Peers attended on the day. Rosie Duffield MP for Canterbury and Whitstable attended the event to meet Katy, Mark and Judy who live in her constituency.  

MPs will be asked to write to the Minister, Penny Mordaunt to highlight the issue of reassessments of benefits for people living with progressive, degenerative diseases.  

Another big part of the day is for people living with MND, their families and carers to meet with other supporters and catch up.

Katy said “It’s so important that people living with MND, their carers and families, together with Association supporters meet with MPs and share their personal stories. Every time someone shares a story this makes a big impact on an MP or Peer. If we keep sharing these

Read more about the event, and take a look at some of the social media highlights of everything that happened. You can also catch up with the speeches from the day and watch our video of volunteers speaking to MPs.

 

 

KM Charity Forum

Mark Styles receiving The Gold Charity Mark from Barbara Martin

The Kent Messenger Charity Group held their annual forum at The Mercure Great Danes Hotel in Maidstone on Friday 13th October.  The forum recognised work of charities and schools for their hard work and dedication.

Mark styles attended from The East Kent Group of MNDA, who are  the Kentish Gazette Charity of the Year 2017.

Mark Styles collecting an award on behalf of Clive Hudson from Barbara Martin

MNDA East Kent was awarded A Gold Charity Mark Award, which was received on our behalf by Mark Styles.

Mark also collected a Brain and Brawn Triathlon Award on behalf of Clive Hudson, who for health reasons was unable to be present on the day.

Mnda East Kent would like to thank KM Charity Team and the KM Group for all the support we have received during 2017 as Kentish Gazette Charity of the Year.

Clare Rozier starts her silence Tonight, at 7pm

On Sunday 15th October at 7pm until Tuesday 17th at 7am I will be doing Silence Speaks in memory of my amazing Dad (David Ironmonger).

David Alan Ironmonger

My dad was such an amazing man, always smiling, loved life and everybody loved him. In 2016 Dad was diagnosed with MND, which was a great shock to himself and the family. Over the year Dad lost control of his legs, arms, couldn’t feed himself, and it got so exhausting for him to talk. He had carers 3 times a day to hoist him out of bed, wash, shave, brush his teeth, etc. 

My Mum, Brother,  Husband and myself  would also help with his care. We would take him out in his electric chair and mobility car so he could enjoy the places he loved to go and see. My dad was so brave and battled through this cruel time and would always be smiling. 

Sadly on July 16th 2017, Dad lost his battle to this cruel disease. Myself, brother and my mum were all by his bedside when he died, and he would still try and smile right to the end. 

I miss my Dad so much and think about him everyday.  

I am doing this as I have a CHOICE too.. My Dad Never had a CHOICE. 

I would love to be able to help someone else with MND by raising money. 

I so wish there was a cure for this wicked and cruel disease.

Please support me by visiting www.JustGiving.com/clare-rozier1 donating what you can afford to help people living with MND. 

Thank you for reading and huge thanks to all donors.

Clare Rozier

To find out more about Silence Speaks please visit https://www.mndassociation.org/get-involved/fundraising/doyourownthing/silence-speaks/

Awareness raising at Dover College

On Monday 9th October I attended morning assembly at Dover College to talk about motor neurone disease and the MNDA.

The college had lost a much loved member of staff to MND and the students have decided to support MNDA through the school year and many events are planned.

The presentation was about MND/Kennedy’s Disease, and how the MNDA supports people and families affected by these diseases.

The presentation focussed on the celebrities the student might know of,  who support MNDA such as Professor Stephen Hawking, Benedict Cumberbatch, Charlotte Hawkins, Eddie Redmayne and Stuart Broad.

Also featured were inspirational people living with MND/Kennedy’s Disease, who do everything they can to raise awareness of MND and to raise funds for MNDA.  People like Mark Styles who was instrumental in getting Kent County Council to be the first council to sign the MNDA Charter, Jason Liversedge who despite being in a wheel chair managed to ascend Snowdon and also to abseil off the Humber Bridge and EyeGazeArtist, Sarah Ezekial who creates wonderful works of art using only her eyes.

Thanks to students and staff at Dover College for supporting MNDA and we look forward to hearing about your future activities.

Clive Hudson

Charity notice board at Dover College