Category Archives: Carer’s Corner

These pages are for carers, containing stories about problems, solutions and general 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

A thoroughly enjoyable Spring Lunch

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.

Diners at the Spring Lunch 2019

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.

Our amazing raffle

Thanks to everyone for coming and special thanks to the staff and management of the Yarrow Hotel, who made us feel very welcome. f

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

 

 

 

 

 

 

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

Fabulous Open Meeting Saturday 17th February

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.

In all a great meeting.

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

Tea By The Sea for MND – the reason I volunteer

Some time ago, when I started to look around for some voluntary work I decided to become involved with MNDA. Initially I joined the committee in East Kent and then trained as an Association Visitor (AV)…starting in 2016. Talking to people I have met since becoming involved with MNDA East Kent I have been struck by the resilience and tenacity that many of these folks show…some are people living with the disease, others are relatives, carers or friends of theirs. A common factor shown by so many is that of supporting each other in the face of this vile and debilitating disease.
The camaraderie I have witnessed first hand is incredible, many form friendships…co-supporting each other and sharing ideas and treatment options. Some have set up fund raising initiatives, and I am aware that quite a number use the network of social media to keep in touch, some are happy to have an Association Visitor offering friendship and support, and some like to attend meetings…networking with others facing similar difficulties. It’s so rewarding to work together with these people and I really enjoy doing so.
One of the many challenges facing PwMND is the gradual reduction of their own physical abilities meaning that activities which were easy for them previously become difficult or indeed impossible. It means that travelling options are very restricted, they may no longer be able to drive, and public transport options may well be very limited. Many of the support activities in East Kent are centred around Canterbury or Ashford…. which means an almost impossible trek for many living in the rural or coastal areas of Kent, such as Thanet. Several voiced their disappointment at not being able to attend these meetings without supreme efforts by themselves and their carers.

Lynn Hudson, Christine Rawlins, John Rawlins, John Sturges, Clive Hudson, Philomena Lawrence.

Upon discussion about these difficulties with the MNDA East Kent committee we decided to offer for a trial period, of three months, a Thanet based support group, meeting once a month in the afternoon in a suitably placed venue, and one which offered many appropriate facilities.
Several options for a venue were explored. We decided on The Botany Bay Hotel in Kingsgate which is ideally situated for all of Thanet, with plenty of parking, access and facilities are excellent. The manager and staff are extremely helpful and willing to accommodate us. Our trial period starting in September 2017, on the last Wednesday of each month from 3pm until 5pm, and we call it Tea by the Sea!!
We contacted many people by telephone and email to invite them to come. We offer tea or coffee with cake or scones, and have been delighted at the response. Each meeting has been attended by PwMND, families and carers. These are small meetings, but so friendly, everyone getting to know each other, sharing experiences, frustrations and coping mechanisms in a spirit of camaraderie and friendship. The hotel has allowed us to use a small private function room for no extra charge, all we pay for is the tea and cake consumed. The first meeting was attended by eight people, subsequently the attendance varied from 16 down to four (the weather was typically coastal atrocious that day!!)
The trial period of three months ended in November, but by popular request was extended to include December and will now continue into 2018, on the last Wednesday of each month.  The next dates are as follows:
Wed July 25th and Wed August 29th all between 3 and 5pm.

Botany Bay Hotel, Marine Drive, Kingsgate, Broadstairs, Kent CT10 3LG

Please make a note of these dates. You can be sure of a warm welcome, and the refreshments are pretty good too!!

If you can make it please come.

Lynn Hudson MNDA East Kent