Category Archives: Carer’s Corner

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

Financial impact of MND Survey

Awareness, Carer's Corner, General Support, Research

The MND Association have commissioned a piece of work to show that being diagnosed with MND/Kennedy?s Disease has a huge financial impact on families. This work is being undertaken by DEMOS and was started following East Kent Group?s Katy and Mark Styles?s speech to the All Party Parliamentary Group on MND in Parliament this time last year. There are two surveys currently running. One is for people living with MND and the other is for bereaved carers of people with MND.

Katy said ? It is a sensitive subject to speak about finances to anyone. I know, first hand, that unless people with MND/ Kennedy?s Disease and their families speak about their real day to day financial worries, decision makers like MPs and councillors will never understand all of the extra costs that MND brings. Seeing the penny drop on the faces of those in parliament, when Mark and I spoke about the adaptations we had made to our home, talking about income we do longer had and equipment we had to buy ourselves, made a collosal difference to those present. I so want this report to have lots of personal stories like ours about the financial difficulties we have to face in light of the disease. Our personal stories of our own financial impact are so powerful and need to be recorded.”

http://www.mndassociation.org/get-involved/campaigning-influencing/financial-impact-of-mnd/

Financial impact of MND

financialeffectofmnd

We believe that MND can cause a huge financial impact on people living with MND and their families, but we?d like to understand more about that and what needs to be done to support them.

The MND Association has partnered with Demos (an independent think tank based in London) to research the financial impact of MND, and raise the public profile of this important issue. We?ll be publishing our findings in 2017 and using them to inform our work with key stakeholders in health, social care, local government and national politicians.

How can you take part?

There are two surveys:

Are you living with MND?

Complete the survey for people with MND

Take the survey

Or you can pick up a paper survey from your Care Centre, Branch or Group, or contact tina.downs@mndassociation.org.

Have you lost someone to MND?

Complete the survey for bereaved carers of people with MND

Take the survey

While a very sensitive topic, we think it is important to consider the financial impact alongside other impacts (e.g. on health and wellbeing) that bereavement from MND has on people?s lives.?

Surveys need to be completed by Friday 27 January 2017.

We would really appreciate your support with this important research.

If you have any further questions about the project, please contact Simone Vibert at Demos by emailing simone.vibert@demos.co.uk or by phone on 020 7367 4200.

October Parliamentary Reception at Church House 18th October, 2016

Carer's Corner, Fun Event, General Support

The East Kent Group were represented at the Association?s Parliamentary Reception on Motor Neurone Disease. The aim of receptions is to engage with MPs and Peers and to speak to them about an issue as well as get more MPs to understand what living with MND is like for the person, their families and carers. This year the issue was the Attendance Allowance ? this benefit is for people over 65. The idea proposed is for local authorities to administer this which the Association is concerned about. The other issue was asking that the change to re-assessment of people with progressive illness claiming Employment and Support Allowance was extended to all benefits.?

Katy Styles, Mark Styles, Julian Brazier MP, Chrissie Batts & Judy Keay
Katy Styles, Mark Styles, Julian Brazier MP, Chrissie Batts & Judy Keay

Association members had been asked in advance to ask their MPs to attend via an e-action. Over 800 people had taken part in the e-action and over 50 MPs attended on the day.??

As well as listening to their constituents, MPs were treated to speeches from Dr Jane Hawking. She spoke movingly about the battle with MND the person has, but also the huge battle financially the families of people living with MND have. Sarah Ezekiel, living with MND, also spoke moving about her story and her latest assessment of her care needs.?

Judy Keay, Chrissie Batts and Mark and Katy Styles were present representing the East Kent Group. Julian Brazier MP for Canterbury and Whitstable attended and promised to follow up the points made. Mark and Katy also spoke to the Minister, Penny Mordaunt about their concerns and other MPs they had met before at the All Party Parliamentary Group. The Minister stayed for the whole event and spoke to many people living with the disease.

Follow up meetings were also organised with MP for North Thanet, Sir Roger Gale and the MP for Folkestone and Hythe, Damian Collins.?

Possible disaster becomes great success

Carer's Corner, Fun Event, General Support

sep24th-2smallOur support meeting at the Iron Room in Broughton Lees started on the? wrong foot, when due to some mix up the hall was not opened for us and we were unable to contact the managers to gain access.

Fortunately for us it was a beautiful day and we congregated in the car park in glorious sunshine while trying to find a way to salvage the meeting.

The owners of The Flying Horse, a short sep24th-3smallwalk across the village cricket pitch invited us to use the bar and we had the most wonderful meeting.

The pub provided coffees, teas and stronger beverages?as requested. ?Lots of happy conversation and lots of laughter ensued.

We have been invited to use the Flying Horse for future meetings and the consensus was that it was a perfect venue.

 

Support Meeting Folkestone – November 12th

Carer's Corner, Fun Event, General Support

We shall be holding a Support Meeting at the Red Cross Hall in Folkestone on Saturday November 12th 11am-1pm.? The full address is 41 Station Road, Folkestone, CT19 4AY.

Our?meetings are very informal with family and friends being most welcome.
It is an opportunity to meet other members, your local committee, together with Chrissie Batts who is our dedicated MND nurse based at Kent and Canterbury Hospital.
We shall be joined by Jane Woodhams who will be offering Hand Massage.? This was extremely popular at our last Folkestone Support Meeting.
If you have any questions, want to share experiences, obtain advice or just fancy a cup of tea or coffee, then please do come along.
We very much look forward to seeing you

Support Meeting September 24th

Carer's Corner, General Support
Our?next support meeting is on Saturday 24th September 2016 from 11.00 a.m. to 1.00 p.m.
It will be held at the Iron Room, Village Hall, Faversham Rd, Boughton Lees, Ashford,
TN25 4HP.
These meetings are very informal with family and friends being most welcome.
It is an opportunity to meet other members, your local committee, together with Chrissie Batts who is our dedicated MND nurse based at Kent and Canterbury Hospital.
If you have any questions, want to share experiences, obtain advice or just fancy a cup of tea or coffee, then please do come along.
We very much look forward to seeing you

Carer’s Week for the Association

Awareness, Campaigns, Carer's Corner
carers-week-16-04
Heather Smith, Steve Bell, Mark and Katy Styles and Alison Railton

On Tuesday 7th?June,?the Association attended a parliamentary reception ? accompanied by campaigns volunteers Heather Smith, and Katy and Mark Styles representing people living with MND and their carers. In all, they spoke directly to about 12 MPs including Justin Tomlinson MP (Minister for Disabled People) and got across some powerful messages about the challenges they and others in their position face. Just a few of the key facts from our carers survey of 2015 that were shared:

  • Over half of carers of people with MND provide more than 100 hours of care per week. Just one of those carers provides care worth a minimum of ?89,440 per year.
  • Almost two thirds of MND carers don?t receive any benefits or allowances
  • 56% of MND carers are retired, while 29% balance their caring responsibilities with remaining in work.
carers-week-16-02
The team talking to Justin Tomlinson Minister for Disabled People

38% are unaware of their right to a carer?s assessment, while only a third have actually had one.

Late in the day Carers Week was granted a parliamentary debate, which was great news. All the work in Carers Week and the weeks running up to it, including the success of the All Party Parliamentary Group meeting held on 24 May, came together. This meant that the MPs present were able to use the facts and personal stories they had heard to great effect. MND was strongly represented during the debate and our concerns and recommendations were heard at the highest level.

Katy Styles said,

?I went to Parliament with the MND Association wanting to be valued. Gosh do I feel valued now! A great mention in the carers week debate by one of the MPs I met at the reception, Barbara Keeley MP.?

 

 

South Coast Trip – Blog Day 12 Torquay

Awareness, Campaigns, Carer's Corner, Thanks

After a good night’s rest we had a leisurely breakfast and since we overlooked the bus station we had a short walk to catch our bus which took us to Torquay.

On arrival in Torquay we had a quick lunch before walking to Torquay Town Hall, where we had a reception.

Ray Hill, Torbay Councillors and One Accord

We were introduced by Ray Hill Chairman of the council, who invited us to say a few words.

We were entertained by One Accord a delightful choir who performed several pieces from forthcoming show on July 2nd. Anyone who enjoys singing should try to get along to their concert.

We were delighted to see many Torbay Councillors who we were able to talk with at length, about our road trip and about services for PwMND. Torbay council has adopted our Charter but the Councillors were acutely aware of the need for full implementation.

Another fantastic event. Thanks to Sarah Hampton for organising everything.

 

South Coast Trip – Blog Day 11 Exeter

Awareness, Carer's Corner, Fun Event, Fund Raising, Thanks

Early start from Weymouth with breakfast specially prepared for 7.30. We caught our first bus for Lyme Regis which delivered us right on time to catch our onward connection to ?Exeter. This is a beautiful often spectacular trip and well recommended.

We checked into our hotel and enjoyed a brief lunch with Lynn’s son Jon who had a break from work to meet us.

We then went to Exeter Cathedral where we found the Bishop’s Palace. We were due to attend a garden party in the grounds but due to inclement weather Bishop Robert invited us to have our meeting in one of his elegant rooms, where a log fire had been lit for the reception.

Among the guests were Bishop Robert of Exeter, ?Lord Mayor of Exeter Cynthia Thompson, Lady Clarissa Clifford Deputy Lord Lieutenant of Devon and Canon Victoria of Exeter Cathedral.

Sally Light addressed the meeting thanking everyone for attending. We were especially de20160613_143241lighted to see many persons living with MND and their carers enjoying the reception.

Huge thanks to all the members of MNDA Exeter and East Devon for organising such a wonderful event and special thanks to Kate of Cake-A-Doodle-Do for the fabulous Devon scones.

South Coast Trip – Blog Day 10 Weymouth

Awareness, Carer's Corner, Fun Event, Fund Raising, Thanks

Checking the various possibilities for Sunday morning travel to Weymouth, we were forced to adopt plan B and travel by train, as we could not find a bus to get us to Weymouth by 11am.

We arrived in drizzle and made our way to Debenhams where Singing for MNDA was due to take place. Upon arrival we were greeted by volunteers assembling a tombola and information stand together with cream teas.

Nickey Bates

A PA was also being set up. ?We had no idea what to expect then Nickey Bates began to sing and we were treated to a glorious singing event. Nickey was followed by son Samual who sang beautifully.

Isaac Bates with brother Samuel filming

Samual’s younger brother 9 years old Isaac was next and he proved to be the star of the show. Isaac could be Weymouth answer to Billy Eliott, He sang and tapped his heart out. He did his set 3 or 4 times, each time getting a big ovation from the passing crowds.

Howard Jackson was passing by and offered to sing. This Welshman had a beautiful voice and sang a few numbers. He also offered to sing at future events.

Councillor Tia Roos talking to Jackie with Samuel holding the mike

Thank you councillor Tia Roos for coming along, we enjoyed talking with you and your support is much appreciated.

Jon Ash talking with Pam Fry

Special mention for Jon Ash who had seen an article in the local paper and came along. He was delightful and made a special trip to return with a cutting from the local paper.

Huge thanks to Mary, Steve, Nickey, Samual and Isaac and everyone in MNDA West Dorset, we enjoyed meeting with you all and loved the singing and dancing.