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Reply To: Do you have an idea how the proposed changes in the NHS will work?
Wednesday 7th is World Duchenne Awareness Day! This is one easy way we can help to promote awareness. The NHS is going through complete upheaval – your local Clinical Commissioning Groups are currently deciding which services they will provide in your areas! You could email, write, contact etc members of your Clinical Commissioning Group – and in particular The Chair – saying something like this :-
The NHS Constitution says :-
The NHS provides a comprehensive service, available to all – and ..It has a duty to each and every individual that it serves and must respect their human rights. At the same time, it has a wider social duty to promote equality through the services it provides and to pay particular attention to groups or sections of society where improvements in health and life
expectancy are not keeping pace with the rest of the population.I reckon those with Duchenne (and other muscle wasting diseases) fall within those groups and should receive particular attention etc …
Do you agree?
LesleyReply To: Do you have an idea how the proposed changes in the NHS will work?It costs nothing, why not? We cold gain a lot, and we could at least gain some recognition. I have just done that and kept the address for future use.
Mike
So many love songs, so little love.
Reply To: Do you have an idea how the proposed changes in the NHS will work?Thank you Mike. And perhaps you can get your friends and family to do the same? You are right to keep a note of the address – I have no doubt there will be another occasion you will need to contact him/her! I think we need to plug that the smaller number of people with Muscular Dystrophy, whilst it is a good number, is qualified to receive the particular attention because they are a ” groups or sections of society where improvements in health and life expectancy are not keeping pace with the rest of the population.”
Lesley
but of course we could always send it to Jeremy Hunt and Simon Steven Chief Executive of the NHS !! Always go to the top I say!!!
Reply To: Do you have an idea how the proposed changes in the NHS will work?It has been confirmed that patients with neuromuscular disorders do fall within the section of the NHS Constitution which says “ … and to pay particular attention to groups or sections of society where improvements in health and life expectancy are not keeping pace with the rest of the population..”
As such the responsibility for providing the necessary services is taken on, under the Five Year Forward View, by NHS England and not passed down to the Clinical Commissioning Groups. The specification for these services can be found on this link
https://www.england.nhs.uk/wp-content/uploads/2013/06/d04-neurosci-spec-neuro.pdf
page 4 onwards gives details of the plan for muscular dystrophy care. This plan is excellent but considering the state of NHS finances will there ever be enough money? Until then – who is responsible for the everyday care etc – who is making GP’s aware of Muscular Dystrophy and the need for physiotherapy?Reply To: Do you have an idea how the proposed changes in the NHS will work?Thank you for keeping us updated Lesley
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Reply To: Do you have an idea how the proposed changes in the NHS will work?Lesley I would guess it is us as the customers of the GPs that keeps them informed, if they want to be informed. AS there are so few of us relatively speaking it may not be top of the priorities. A financial incentive as with flu vaccines or similar is usually the thing that works. My GP is aware of the need for physio but sadly the physio department are not. All they can offer are some leaflets. I have tried rubbing those on the affected area but nothing changes. So I will carry on going to see the marvellous people at the Neuromuscular centre in Winsford. They offer me regular physio and continuous support. It is a 156 mile round trip but soooo worth it for me.
I would also like to say thank you for ebavering away and finding all these obscure rules. They truly are changing my way of thinking.Mike
So many love songs, so little love.
Reply To: Do you have an idea how the proposed changes in the NHS will work?Hi Mike – you are very welcome! Also you are right – it is down to us though MDUK have recently produced an excellent report on the need for pysio – Overstretched – and drawn it to the attention of those higher upper the chain! I am trying to establish who is responsible for raising awareness etc whilst the plans for this new system plough on. I cant make the CCG meeting here in September so have submitted these questions for the November meeting :-
What is being done to raise GP awareness of muscular dystrophy (and other muscles wasting diseases)?
What is being done to raise awareness of the importance of physiotherapy for those with neuromuscular conditions ?
In the meantime, hopefully, I should have an answer about the responsibility be it CCG or NHS England.
I put a posting on MDUK Facebook pages explaining I got interested when a document came down to the PPG – being of a certain age I felt I needed to know what will happen to the Stroke centre – also I wanted to keep an eye on the services for neuromuscular disorders as I’m Secretary of our local Branch.
At first I was the only one interested, probably because the documents are so daunting, but at a question/answer session we had with our GP I was the only one asking questions but the other members said it was interesting and it will be on the agenda as a regular event! At least it is raising interest … even those of us without neuromuscular disorders need to be aware of what is happening …Lesley
Reply To: Do you have an idea how the proposed changes in the NHS will work?What a busy bee you have been and for the benefit of so many. I will carry on doing my own little bit to help.
Mike
So many love songs, so little love.
Reply To: Do you have an idea how the proposed changes in the NHS will work?As I said the changes are important for all of us but particularly more so for those with neuromuscular disorders. Don’t underestimate your efforts .. they do finally pay off!
Lesley
Reply To: Do you have an idea how the proposed changes in the NHS will work?I was already a member of the Patient Participation Group at our Surgery and have been using this to keep up with proposed changes to the NHS over next 5 years. The care for those of us with “everyday” illness etc will pass to the Clinical Commissioning Group. This will be detailed in the Sustainability and Transformation Plans (STP’s). Patients with neuromuscular disorders wont be “transferred” as they are part of the much smaller group who qualify for ““…. and to pay particular attention to groups or sections of society where improvements in health and life expectancy are not keeping pace with the rest of the population..” and will fall within the remit of NHS England. I’ve seen the proposals for this and they are excellent – if only we could ensure there is enough money! And if there is it wont all happen for a while. In the meantime I’ve been trying to find out who is responsible currently for providing care, treatment etc not to mention training our GP’s, providing sufficient Physio’s – need I go on!. So far I haven’t had a reply from NHS England to my query but have posted it on the agenda for the November meeting of my local Clinical Commissioning Group.
This is something we can all do – to keep up the pressure on those who should be caring for those with neuromuscular disorders. If anyone is interested I can post some links to the documents – they are heavy duty but so important
LesleyReply To: Do you have an idea how the proposed changes in the NHS will work?Just hs notification of the next User Group meeting from our GP surgery. two days notice!! I wonder if tehy actualy want anyone to turn up?
Mike
So many love songs, so little love.
Reply To: Do you have an idea how the proposed changes in the NHS will work?Mike – that is disgraceful! They really do need to give plenty of notice – especially for those who may have mobility difficulties! If you do manage to make it I hope you find it useful. I found at first I had to take time to find out what is what but I was lucky – it was right at the start-up of ours. Do you have the links you can pass to them to update their GP learning and to pressfor pysio support?
Good luck – well done if you do manage to get there!
LesleyReply To: Do you have an idea how the proposed changes in the NHS will work?Hi Mike – did you manage it to the meeting? Hope you did but they didn’t give you much notice. We had a Patient Participation Meeting this week – sadly the GP who is part of the STP team was at another meeting. I did get time to ask some questions which will be noted in the Minutes. I have established those with neuromuscular disorders will stay with NHS England and should qualify for special attention as part of those who “fall behind the rest”. I’ve chased NHS England to establish who is currently responsible for ensuring GP’s have the training for neuromuscular care and the importance of physio – but of course haven’t yet had a reply but am still on it! At least at our meeting all the others were interested .. at least the report of my questions will go on Surgery website when the Minutes are approved so others can catch up too!
Hope you are well.Lesley
Reply To: Do you have an idea how the proposed changes in the NHS will work?AND .. I made a point of drawing attention to document – Engaging local people – https://www.england.nhs.uk/wp-content/uploads/2016/09/engag-local-people-stps.pdf. I know the STP’s are due to be published by the end of the year but – I don’t know how binding this document is but it does say ‘Consultation must take place when the proposal is still at a formative stage – consultation cannot take place on a decision that has already been made’ I will keep a note of that and ask again at the next meeting …
LesleyReply To: Do you have an idea how the proposed changes in the NHS will work?Sadly I could not get there. Apart from the short notice my father is dying and I am his main carer, so I was taken up with that. If I had had some notice whereby I could plan to get someone to cover or whatever. Still thee is always next time.
Mike
So many love songs, so little love.
Reply To: Do you have an idea how the proposed changes in the NHS will work?So sorry Mike – life must be particularly tough for you at the moment. I tried to respond earlier but my password wouldn’t work .. hate having to plough through all that password stuff!
Take care
LesleyReply To: Do you have an idea how the proposed changes in the NHS will work?Life is somehwat challenging at the moment thank you, that is why my contributions are ratehr sporadic. I do try and watch what goes on though.
Mike
PS I know what you mean by passwords.
So many love songs, so little love.
Reply To: Do you have an idea how the proposed changes in the NHS will work?Sorry for the delay in posting. I send a letter off to NHS England weeks and weeks ago – the reply finally arrived last week. I will be taking it with me to the CCG meeting this week where I have posted two questions about responsibility for training and physio. Will let you know what happens – if I get a word in that is!!
Lesley
Reply To: Do you have an idea how the proposed changes in the NHS will work?My apologies for the delay in getting back to you about my endeavours .. it was all held up whilst I waited weeks for a reply from NHS England. That arrived with the information I needed … I posted two questions on the agenda for the Clinical Commissioning Group meeting today and that reply gave me some back up. A member of our Branch who has Duchennes and is 42 – yes 42!! – offered to come with me! The Chairman of the meeting spoke to us both before hand about the questions I had asked – I also said I would like to add an additional item if possible as I had heard more from NHS England. He explained that members of the public are not normally allowed to speak but said he would call on me if I didnt push it too far. He duly dealt with the questions answered, allowed me to ask my question and suggest the need for the e-modules for GP and physio training. There was a lot of response and I now have an arrangement with the Deputy Chair for the two of us to join him in a meeting at a later date – that will have to be after our Spirit of Christmas carol concert! So pleased, I now have contacts, several are listening and things are really moving on in the NHS. What a lovely group they all were!
LesleyReply To: Do you have an idea how the proposed changes in the NHS will work?An update on my efforts to understand the changes in the NHS and to raise awareness of the needs of those with neuromuscular disorders. I went to our CCG meeting after posting questions about physio, that was addressed and I was allowed to ask more about training in view of reply from NHS England which said “Currently NHS England is working with CCGs and NHS Trusts around specialised services to give CCGs more say in the decision making around the planning and commissioning of specialised services.” I felt if they are now having to make decisions they should be aware of all the training offered by MDUK. The Deputy Chair rang me a few days later for a discussion, I sent him my notes and am waiting for his response. Our CCG has published its STP and does have an STP Information Bus coming to each town to field questions. I called in with a few questions, the two ladies were very good and said by the time I left they were aware of some of the problems for those with NM disorders! I also stressed the importance of prevention could be linked to respiratory physio, cough machines etc. It is so easy to raise the profile simply by asking questions ..
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