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.
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.
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 January 31st, Wed February 28th, Wed March 28th, Wed April 25th, Wed May 30th, Wed June 27th all between 3 and 5pm.
Please make a note of these dates. You can be sure of a warm welcome, and the refreshments are pretty good too!!
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
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.
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
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.
We had a good attendance at our latest monthly support meeting which was held at Thanington, Canterbury on October 14th.
We heard a presentation from Dawn Cockburn and Julie Murby of the Harmony Therapy Trust. A charity who provide NHS approved therapies to patients living with life limiting or debilitating diseases, including MND.
We heard that Harmony Therapy Trust is run entirely by volunteers. The charity is based on the Isle of Sheppey however, they have expanded their services to cover the whole of Kent.
The charity can provide up to 6 sessions of therapy to persons who would be expected to benefit from the therapy. Therapies are only provided following medical referral.
Harmony Therapy Trust can provide a range of therapies including acupressure, aromatherapy, counselling/talking therapies, healing/reiki, holistic massage, hypnotherapy, ibx nail treatment, indian head massage, osteopathy, reflexology and reflexology lymphatic drainage.
Our first Tea by The Sea was held at the Botany Bay Hotel, Kingsgate, Thanet on Wednesday 28th September.
We had six people present 3 of whom had not previously attended one of our meetings.
We enjoyed a good chat with tea and scones and all present were agreed the idea of a local meeting held monthly was a good idea, especially as they felt unable to travel to other meeting held further away in Kent.
Tea by The Sea is on the last Wednesday of October (25th) and November (29th) at the Botany Bay Hotel, Kingsgate at 3pm. At the November meeting we will review our plans for 2018.
We were invited on Sunday August 6th to visit Strode Park Foundation for tea and a walk around parts of the house and the grounds.
There were 12 of us attending and we enjoyed a fabulous tea of sandwiches, scones with jam and clotted cream and a selection of cakes.
The sandwiches, scones and cakes were prepared at Strode Park by ??, all were beautifully fresh and delicious. The tea was served by Anthony who thoroughly spoiled us.
We were shown around the grounds, Daren found a lake with a no fishing sign, which indicated to him there would be something worth catching.
The open air auditorium is a fantastic facility with every part accessible by wheelchair, we were invited to look at the website Strodeparkfoundation.co.uk to find out about concerts and booking them if we wished.
We were shown around non residential parts of the house, including the gymnasium and the hydro therapy pool, which is available to people living with disabilities including MND.
Daren looked up to catch this image of our group – most of us missed it!!
Huge thanks to John Cotterill who showed us around and to ?? and Anthony for making the tea so special.
We have been invited to have tea at Strode Park at some future date and we are welcome to attend any public events held at the Foundation.