Category Archives: Awareness

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!

Thank you Wealden Business Group.

The Wealden Business Group have supported MNDA East Kent throughout the past 2 years, organising 3 major fundraisers, as well as weekly collections.

More than 60 people attended a race night in the Little Silver Hotel.  This was a thoroughly enjoyable evening and raised a considerable sum for MNDA in East Kent.

A Murder Mystery Evening at Little Silver Country Hotel in Tenterden. The case was The Curse of the Willoughby Diamond. The evening started with champagne followed by an excellent 3 course meal to die for!! During the meal the actors presenting the murder mystery developed the plot of the murder and murder w

Clive Hudson MNDA – Martin Tickner WBG

as indeed committed.

The  Black Tie dinner and charity auction held at The Little Silver Country Hotel, Tenterden on Saturday (17 March) raised more than £4,000.  The event, which included a fizz reception, auction of promises and disco was in aid of the Motor Neurone Disease Association.  The dinner marked the culmination of two years of fundraising for MNDA by the Wealden Business Group.

The grand sum raised by these events was  £10,579.81 which was presented to Clive Hudson, Chairman of MNDA East Kent Group on April 18th, by Martin Tickner.

MNDA East Kent would like to thank the members of Wealden Business Group for  their generosity and support.

 

Pearson Whiffen 5-a-side Football Competition

Kent Company Pearson Whiffen Recruitment are running a 5 a side Football tournament on Saturday 2nd June, starting at 8.30.  All proceeds from the day will be shared by the Kent Branches of MNDA.

To enter a team please contact Rob at  rob@pearsonwhiffen.co.uk 

We are looking forward to a fabulous day attending this event and hope to see many of our supporters on the day.

Grateful thanks to Pearson Whiffen Recruitment Ltd. for selecting MNDA to be the charity to benefit from this competition.

Thanet Loop Pub Collections – Easter Saturday 31st March

Some years ago a group of bus drivers on the Loop (for those not from Thanet, the Loop is circular bus route around Thanet), noticed that there were many great pubs on the route and it was decided by the group of young men that it would be great to visit each one.

It started as a fun event but soon morphed in a charity fund raising event.  Over the years this group of young men have raised many thousands of pounds for local charities, including Pilgrims Hospice, Beach within Reach and Caring for Connor amongst others.

John Rawlins

One of the regular travellers was John Rawlins, who sadly died of Motor Neurone Disease earlier this year.  The group has decided to raise funds for MNDA in East Kent in memory of their great friend.

This year the journey started and ended at Weatherspoon’s in Ramsgate and collectors travelled by the Loop to Westwood Cross on to Margate, round to Broadstairs, then on to Ramsgate stopping at over 20 hostelries on the route.

Pubs and customers gave generously to the group as they travelled around in  fancy dress. The fantastic sum of £578.51 was collected and this will be used to support people living with MND in East Kent.

MND is an incurable disease which kills 6 people every week, and life expectancy after diagnosis is usually short, so there is a great need for urgent support for anyone diagnosed with this awful disease.

The MND Association in East Kent would like to thank all the collectors for their generosity of time and for the fabulous fancy dress.  We would also like to thank all the pubs visited and all the customers who gave so generously.  Thank you all very much.

Accept the things you cannot change

Oh – It can be such a nuisance, and so frustrating too!
These things I took for granted, but now find hard to do.
Like putting on a shirt, sweater or a tie,
I have to call upon my wife no matter how I try.
D.I.Y. now a thing of the past
Even those simplest of tasks-
Like raising a hammer to strike a nail,
Sounds so simple, yet I fail.
Muscles refuse all my demands,
My neurones are in sole command!
And they in turn are burning out:
Motor Neurone if you’re in doubt.
This disease is reasonably rare
And why I need such help and care
But the other day, I felt quite grand,
Read on and you will understand.
At the hospital, the other day
I saw a chap in a far worse way
With tubes, pipes and drips galore
His age? Probably thirty four!
Lying in his hospital bed,
Doctors, nurses, one shook his head.
Me? Well I was exit bound.
So when you’re feeling down and blue
Remember those worse off than you
Accept the things you cannot change
And cope with those within your range

Written by James Peel

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.