is for people with Motor Neurone Disease (MND) to give courage, hope and
positive determination for others to live with this condition. I don’t like to call it a disease it such a
horrible word for people to say Martin had MND for five years.
and I would often start reading articles in the magazine and stop reading them
as it would often be about people who had left us, I don’t want to sound
disrespectful to anyone, but we found that extremely hard reading.
wanted to open the magazine and find positive stories, uplifting articles, tips
and guides on how to manage life with MND.
about people’s adventures, ideas that people might have and hobbies that people
can do despite MND.
would often start reading articles only to shut the magazine so I wanted to
write an article that was uplifting and if only one person gained from it, I
would be happy
the beginning everyone who has MND knows what it is like, so I’m not even going
to go there. I was racking my brain every minute for something to help. It came to me acupuncture may be beneficial, now
this may not work for everyone, but in our experience, it was so helpful.
went to see this doctor in Canterbury, who was extremely professional. You can imagine our lives were upside down and
we could discuss nothing. It seemed we
could only talk about getting calls from hospitals, from nurses, from the
hospice; all this at the most stressful time.
We felt situation was helpless. Our emotions were so high, and
everything seemed to be collapsing in our world.
went to this Chinese doctor, who lead Martin into the back of his practice, and
I waited in the front, not knowing what to expect. When Martin came back after half an hour, he
was smiling which made me smile. Just
the way he was different.
left and when we got to the car, I was asking millions of questions about what the
Doctor had done. Martin told me he had
put these needles around arts of his body, telling him he could not cure MND,
but that he could but all the emotions Martin was feeling in a box and put them
to sleep in the back of his mind.
shut the lid on the box, from that day our lives changed we could talk about
everything freely without having a breakdown. The positivity was astonishing, and we started
living with MND. Our lives were no longer taken over by MND.
continued to see him for a few months until it was no longer necessary for us
to go. We decided that we would live
each day as we would have done without MND and we did just that!
went fishing, it took our minds somewhere else, outside in the fresh air
laughing and having fun. When Martin
could no longer fish, I started to fish and my excitement and laughter
when catching a fish, made Martin laugh.
He said it made no difference who was fishing he found watching me, so
engaged in it, fun for him.
the sort of guy he was to be able to find hobbies and activities that keeps
your mind focused is the best medicine in the world. It takes you out of your thoughts and allows
you to think of other things. It gave us the strength to carry on as normal.
We were not hiding away from MND, this was the therapy which worked for
not saying it was all rosy, there were the hospital visits and the consultant
visits which in the end we stopped attending.
Martin thought them a waste of time, all doom and gloom. Our experience was not positive, but this
article is about hope, courage and determination.
time came when Martin needed a wheelchair, challenging for most but not content
with the wheelchairs available, which would just about go over a stone when
outside. A friend put up a fundraising page and Martin
had the best outdoor wheelchair available and a van with ramps. He would sit in the back and I would drive,
and we went on the beach, up hills in the mud this wheelchair went everywhere. Martin could still do whatever he wanted to do
and go anywhere he wanted.
Martin’s condition progressed, we sold the van got a car with a portable car
hoist and Martin sat in the front still doing what we wanted to do. He would spend hours looking for stuff on the
Internet so we could continue do what we wanted.
time we changed our hobbies to the garden which became our sanctuary. I bought trees and shrubs. All sorts of planning went on and we always
could write pages and pages more. I
wanted to write this article to give you an insight into Martin’s world with MND.
was never a walk in the park. We coped by being together, doing everything
together, having many interests. Keeping
one step ahead motivated by love, caring for one another, smiling, laughing
reading books out loud, listening to music, having a beer, smoking a cigarette,
sitting out in the snow, and standing in the wind because you like the wind in
facing forward even when you are ill you are still you! MND cannot and will not change that.
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:
“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.
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.
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
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.”
East Kent MNDA Group help their annual Spring Lunch on
Saturday 27th April at the Yarrow Hotel, Broadstairs.
There were 36 diners and we all enjoyed a well prepared and
presented 3 course meal by the staff of the Yarrow Hotel. The food was excellent and heartily enjoyed
by everyone present.
We had the honour of having Richard Coleman, the Chairman of
our Board of Trustees as our guest.
Richard gave a short speech about the history of the association and
where it is going in the future, which was very well received.
Richard made presentation to Katy Styles and Clive Hudson
for service to the association.
We had been donated a 4 Ball Golf Prize for Goodwood and we
duly auctioned this. Pat McCabe won the
bidding with a donation of £100.00.
Adrian Powell made an impassioned plea for diners to either
join our walk to D’Feet MND on May 18th or get their friends to do
so. See www.mnda-eastkent.org.uk/walk19
We ended with a raffle, which is always fun. It is a joy to watch the anticipation of our young diners. Thanks to all our members who contributed prizes.
Thanks to everyone for coming and special thanks to the
staff and management of the Yarrow Hotel, who made us feel very welcome.
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.
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
The East Kent Group met on Saturday for an open meeting for people living with MND, their carers, friends, family and volunteers.
We had 23 attend in all and we had the honour of a visit from Councillor Colin Spooner The Sheriff of Canterbury, who addressed the meeting. Huge thanks to Colin for making the time in his busy schedule to visit with us.
Other contributors were Chairman Clive Hudson who spoke briefly about fund raising plans; Judy Keay who spoke about our Association Visitors; Lynn Hudson who spoke about our monthly Tea by the Sea meetings and finally Katy Styles who updated us on current campaigning activity.
We enjoyed sandwiches and cake prepared by the committee members and lots of warm hearted and friendly conversation.