CCGs in the West Midlands must provide for the citizens of the...
After a long day on Wednesday in the Parliament, I took the opportunity to raise issues which are facing patients at the Neuromuscular Centre in the West Midlands. Why are #CCGs not providing money to this important centre for sufferers of muscular dystrophy? Let me know if you've had issues with local CCGs - comment below.Posted by Siôn Simon on Friday, 13 November 2015
Neuromuscular Centre Midlands – What we do
NMC Midlands is a charity set up to offer support to people with muscular dystrophy and other muscle wasting diseases in the Midlands region. There are 70,000 people with muscle wasting disease over the UK and around 12,000 of these are in the Midlands region alone.
People with these conditions experience a significant reduction in the amount of physiotherapy they receive from the NHS after turning the age of 19. The correct physiotherapy is essential to people with muscle wasting diseases as it maintains mobility and reduces the rate of muscle deterioration. One of the main services NMC Midlands offers is free and continuous specialist physiotherapy for people with these conditions. In addition we have services available to offer support for other areas of life that become challenging to people with muscle wasting diseases. To find out more about the wide range of services we have on offer and on how to get in touch with us please click here.
New ways to support NMC Midlands! – Single Donation and Standing Order Donation forms
West Midlands MEP Siôn Simon raises CCG issue in Parliament
Following his visit to the NMC Midlands earlier this year, Siôn Simon, Labour Member of the European Parliament for the West Midlands, raises the issue of local CCGs Coventry and Rugby and Warwickshire North, not contributing to patients’ treatment at the NMC Midlands, despite the long term cost savings to the NHS and much smaller CCGs paying for treatments. Thank you to Siôn for his support for the Centre and the essential treatments provided by our specialist therapists. Click here to watch the video clip.
Please click here to view our NMCM Newsletter-Autumn 2015 with news and developments over the last few months at the Centre. Our services are continuing to develop and improve, and feedback from service-users of benefits they are experiencing are reflecting the quality of the services and care our team are providing. Such feedback has not only been inspiring but also reaffirms our commitment to providing services that can make such a substantive and meaningful difference to those who receive them.
The Centre needs money to stay open and your support is more critical than ever to our survival. None of what has been achieved thus far would have been possible without the support of donors and volunteers who believe in what we do. We hope you will be inspired, as they have been, to increase your support for the Centre so we can continue to make services available to all who need them.
As always, we are very keen to hear from you regarding suggestions for service improvements, fundraising ideas and volunteering. We also invite you to visit the Centre to see and hear first hand how our services are making a difference.
Thank you for your continued support!
The NMC Midlands Team.
Sion Simon, MEP for the West Midlands, visits NMC Midlands
On 28th March 2015, MEP for the West Midlands Sion Simon, visited NMC Midlands to meet service users, staff and supporters and see first-hand our therapy in action and the difference it makes for service users and their families.
Sion was interested to hear about the development of the Centre, based upon the model of best practice pioneered by NMC Winsford in Cheshire, and the need to provide condition specific therapy for patients across the Midlands without the barrier of hours of travel. He heard about the sterling efforts of the original Trustees and supporters who, with the help of Muscular Dystrophy UK and NMC Cheshire, fundraised and managed to develop the Centre, investing in specialist equipment and facilities allowing the Centre to provide therapy for patients across the range of neuromuscular conditions.
Current service users spoke to Sion and told him about how the therapies provided at NMC Midlands had impacted upon their lives and the management of their condition. Andy Collins, who has FSH Muscular Dystrophy, told Sion how the regular therapy provided meant that he now had significantly fewer falls, was able to maintain his mobility and independence, as well as retaining a positive outlook on the management of his condition.
Sion was also interested to hear about the way the Centre was funded, the amazing fundraisers and supporters, and the role the NHS and Clinical Commissioning Groups should play in funding such services. Sion has promised to stay in touch with the Centre and support its engagement with the NHS to ensure that more patients with neuromuscular conditions can access such life changing services.
The Coventry Half Marathon 2015
Here is a picture of some of our fantastic fundraising runners, after the Coventry Half Marathon on Sunday 1st March 2015.
This looks to have been one of our most successful events to date, bringing in nearly £3,000 from our fantastic runners and those who supported them.
Well done to all of the fundraisers that took part and thank you for your incredible efforts!
New Extended Hours for Therapy at NMC Midlands
Click on the link below to view our new extended treatment hours:
“My visits to the centre started when I realised how much of a difference regular treatment made to my physicality and well being. I did manage to get one physiotherapy appointment and 6 hydrotherapy appointments through the NHS. This was approximately 3 years ago. By the time I came to the centre 2 years ago I had experienced a rapid reduction in my mobility, movement in my neck and shoulders, and my hands.
Like many of us with muscle-wasting conditions I don’t want to be a burden on my family, the NHS, my GP or anyone else. Attending the Centre once a month for treatment enables me to maintain a level of personal independence that 3 years ago I thought would not be possible. Most importantly, it enables me to continue to function effectively as both a mother and an employee as my motivation is significantly improved after visiting the centre and I am able to put some of the practical ideas that we discuss into my day to day activities.
Since attending the centre I am no longer experiencing the rapid deterioration that I had previously, and in some areas I have actually seen an improvement. The fact that I have suffered no falls in over a year, or had to take time off work through this condition speaks volumes.”
“Coming to the Centre has allowed me to have a normal life, and helped me have a positive outlook. The importance of this cannot be underestimated. The Centre is a real life-line- not only offering physiotherapy and osteopathy but also counselling and advocacy sessions. Often we feel written off by the medical profession because we have deteriorating muscle conditions but this Centre strives to provide you with the specialist support you need and deserve.
I had previously been going to a chiropractic clinic which was not only costing me but the treatment I was receiving was limited and never advisory. I longed for treatment from someone who was knowledgeable about my condition; someone who could give me some advice.
The treatment enables me to remain active and physically able to keep up my optimal ability. Without the osteopathy treatment I get at the centre I often experience a decreased level of physical and mental functioning limiting my life choices and also impacting on my mood. The staff at the centre are so friendly and good natured that it really does make me feel more positive and that is before I have even had any treatment.
The osteopathy I receive is what I find most beneficial and I can’t begin to explain how valuable it is to me. Osteopathy helps me to understand how my body is functioning and provides advice as to what might improve aspects that are limiting my range of movement. This is of paramount importance and so is the ‘stack breathing technique’ I have been taught. I am able to do this technique at home so really feel the benefits.”
“Being referred to the NMC Midlands and its brilliant specialist physiotherapists and osteopaths has been very important in living with my Duchenne Muscular Dystrophy. The centre and its specialists assess you and then the care becomes more person centred.
My issues were regarding my arms/fingers getting stiff and stopping my quality of life. The osteopath did some shoulder exercises and instantly my arms warmed up and became more flexible. My mother was shown these exercises and we do them everyday, it has improved my independence as I need less care.
Without the NMC Midlands my muscular dystrophy would have restricted my life but due to the fantastic centre my quality of life has improved and my muscle flexibility has been improved. It’s an important centre as you cannot access these specialist services easily in Leicester, I cannot stress how brilliant this centre is in providing necessary care. Everyone would benefit if they were referred to the NMC Midlands”
“The physios here are outstanding! So patient and so concerned! I have only had 2 sessions and already can see benefits. All staff are fantastically helpful and I value being able to spend time at the Centre!”
“I have got nothing but praise for all at the NMC. Not just the physios but all the staff in the office, and all the people who help free of charge. For the first time in my life I actually look forward to attending my sessions. Ellie and Lynn are fantastic as you can also have a laugh and a joke with them.”
“I have been helped by these wonderful people, it’s a vital place for anyone like me they are a fantastic professional and dedicated group who are always there for anyone who needs them. They deserve our help back in any way we can and especially if you can do some fundraising. ”
“I am very grateful to everyone at NMC, especially for the physio, acupuncture and soft tissue massage which have helped my balance and my confidence when going out. The pain in my muscles has reduced as a result of the treatment I have received. All staff at NMC always make me feel welcome and I am glad there is somewhere where I can go where my condition is understood.”