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Do you have an idea how the proposed changes in the NHS will work?
I came across this by chance!
What do you know about the planned transformation of the NHS? Will we (MD sufferers) lose out? Will it be necessary to make sure “we” are at the top of the priority list?
The proposals were published in 2014 by NHS England – The Five Year Forward View. This is heavy going but it is possible to skim over large parts – it will give some idea of the aims. Are you concerned about the problems getting physio, would you be concerned that “centres of excellence” or similar might not have the room, staff or equipment to include the care for neuromuscular sufferers? Etc etc.
Every “area” now has to produce its own proposals for the deliverance of these changes. These proposals are currently going out to GP Surgeries for their Patient Participation Group to give feedback. There are several ways we can send feedback (even without seeing the local document) – perhaps we should be thinking of doing something to highlight the need?
I’ve already sent my “thoughts” in. Anyone else wish to do so? Have spent a lot of time looking at this – any questions please do give a shout.
Lesley
Reply To: Do you have an idea how the proposed changes in the NHS will work?Having spent over thirty years in the NHS and lived through many ‘transformations’ I cannot say I would think this is going to be any better or indeed different to all the others. Some things we can ve sure of. There will be lots of bean counters ensuring we know every possible statistic imaginable about the proposals. only the good outcomes will be made public. The frontline staff, clinical that is, will have no input into what happens. Most hospitals are already deep in debt and their primary focus will be to save money, not to extend patient care. The number of patients will go up, and there will not be sufficient funding to go around, thus hard choices will need to be made, choices not necessarily based on clinical need.
The examples you mention have already happened locally, except thst there is no centre of excellence nearby. Physio will not give me treatment only leaflets. The hospital site is already crammed full with nowehere to expand, even if money was available. The nerest neurologists are 25 miles away at the least (at my last appointment he said there was nothing he could do for me). My last tangle with A&E when I lay dying on a trolley the doctor had to be told what MD was.
There is a very long way to go in education of medical and other staff, but headlines and funding will be grabbed by those conditions which are in the public eye; paediatrics, cancer and A&E. I am not suggesting for one moment that their funding be cut but for an MD campaign about MD funding and treatment to eb successful we have to make sure that those two ketters have the same standing as the three groups I have mentioned.
I hope that this does not make me sound too cynical, but I think you would get almost the same response from any current or past NHS staff member.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
That’s not being cynical – its being realistic! I agree with everything you say! I had excellent care from the NHS when I was much younger so cant moan about that. But I do recognise the financial and physical limitations. I too have seen many “transformations” but this one is worrying! It is a completely new approach. Have you had a chance to read the Five Year Forward Vision? Its easily available on google. The main aims are to make patients more responsible for their treatment, to concentrate on prevention and to give quality joined-up care!! MDUK have this week had meetings in Parliament regarding physio and have produced a physio report and a letter to send to our MP’s to back it up. I know our efforts may not pay off but we certainly wont get anywhere without trying. The “Sustainability and Transformation Plans (STP) are the way our local areas intend to carry out the changes. These outline documents will be sent to every Surgery so that the Patient Participation Group can give feedback. Our letters could also include comments about the proposals.
Our politicians have been given a “wake-up” call and I feel if ever they are likely to listen to the public this may possibly be the time! One thing I’ve learned over all these years is “perseverance will pay off eventually” .. of course when that will happen is anybody’s guess but it would be lovely if it were to happen now.
LesleyReply To: Do you have an idea how the proposed changes in the NHS will work?I will try and read the document , but perhaps putting that to one side for the moment, what would we, as MD sufferers, actually like to see as the best support option for us? Having established that we could then fit it in to any plan, new or old, that comes along. at least we would be fighting for what is needed at every turn. I am all for joined up care, and inded when I was in praciice that is what I tried to do. Sadly there are too many ’empires’ around for that to happen easily.
SO perhaps ideas then for the ideal system for us MD folk, what are the suggestions?Mike
So many love songs, so little love.
Reply To: Do you have an idea how the proposed changes in the NHS will work?The document says it is aiming to concentrate on prevention, early detection, quality care, etc etc – in fact the ideal system we would all like. But you and I know that in view of the numbers and finance the priorities in the new system will be those who are at the top of the list … perhaps we should be sending the letters to our MP about physio (MDUK have already laid the ground work),and sending letters to them telling them we wish neuromuscular treatment etc should be amongst those at the top of the list etc in the new proposed system. We could also be emailing our Surgery about GP training module available, about the alert cards available. If we all send out loads the message may get through …
Reply To: Do you have an idea how the proposed changes in the NHS will work?I completely agree that this needs to be done, under the auspices and with the support of MDUK. My own surgery is very responsive to my needs and requests and have always said any support is welcome. My MP could not give a damn and does not respond or act upon letters. In some respects there being so few of us is a disadvantage in highlighting need as often teh weight of numbers goads action. For example with obesity or drug addiction. No I would not wish more people to have what we do. SO MDUK do we have your blessing and support, and how do you think we can start off with this to make a difference?
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 – am with you on that!
Reply To: Do you have an idea how the proposed changes in the NHS will work?Whilst I make some enquiries you could be looking at one approach. Do you know if your Surgery has received the outline Sustainability and Transformation Plan? This is the local plan for the way to get where the Five Year Forward View wants us! If they haven’t responded you perhaps you could have some input to their reply?
Lesley
Reply To: Do you have an idea how the proposed changes in the NHS will work?Also – in the meantime – we can be directing people to this link for the GP training module :-
http://oldsite.musculardystrophyuk.org/information-for-professionals/health-professionals/training-and-professional-development/gp-e-learning-module/
This can be sent to all Surgeries – most of them have a website nowadays. And here is the link for the alert card …Reply To: Do you have an idea how the proposed changes in the NHS will work?Help is on its way to work out a way forward … watch this space!
Reply To: Do you have an idea how the proposed changes in the NHS will work?I am not aware that they have had the document yet at the surgery. I will make enquiries and also post on the liks you have put in.
I am also going topost here a couple of links which worry mehttps://secure.38degrees.org.uk/page/m/74c06cfd/2d5fa746/664fb40d/46233309/309212774/VEsA/
https://secure.38degrees.org.uk/page/m/74c06cfd/2d5fa746/664fb40d/4623330b/309212774/VEsO/
These tend to indicate that other things are going on behind closed doors (in the NHS they always are). So we need to push ahead with our own plans as hard as possible – now.
Mike
So many love songs, so little love.
Reply To: Do you have an idea how the proposed changes in the NHS will work?First of all we need to get people to look at the Five Year Forward View to try to get an idea of what is planned – whether or not all of it happens is debatable but some of it will – we just need to make sure it includes MD sufferers!
Mike – I have seen the outline proposed STP – it has been sent to my local surgery this month for feedback from the Patient Participation Group. This is what alerted me to this move. I have sent my thoughts back and stressed there should be room for MD care and treatment to be included in all the plans. The first link you have put in is about STP and the second is about “cover-up”. Cant do anything about the cover up but we can make the initials MD be included in the plans! To help do this we can all send the link :-
to our own Surgery asking them to look at it so they become more aware.
I do have a link for the suggested letter to our MP’s about physio and the physio report recently produced by MDUK but am waiting to find out how I can put a PDF document on here!
Then I plan to put a sensible co-ordinated explanation on this forum and put an article on the SW Facebook page urging people to read the reason for doing this. MDUK are also looking to arrange for a similar item to be put on the other Facebook pages. We can include the request people ask their family and friends send something to support. And of course there is also the Health Committee we can approach! I cant find anywhere to Private Message you but would like to so we can work together to get attention drawn to the need for action.Reply To: Do you have an idea how the proposed changes in the NHS will work?I’m going to be off-line for a few days. Hopefully will be back on Tuesday fully sorted. Then I should be able to do things to get it all moving … well that’s the plan!
Reply To: Do you have an idea how the proposed changes in the NHS will work?Look forward to hearing from you then. Been offline myself until today. Went away for physio and at the same time the body succumbed to the worst episode of weakness and pain I have ever experienced. A bit back to normal, but I was traumatic.
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 to hear that Mike – it sounds horrendous – but do hope you are feeling a little better by now. I am working on the “entry” I will put on this forum – that’s nearly sorted – then I will work on the item I put on SW Facebook. I can then get it on Duchenne Grandparents page and also a young friend will put it on Duchenne Parents page. I know there are calls saying the moves in the NHS are being kept secret but they are not if we make effort to see them and/or influence them!
Reply To: Do you have an idea how the proposed changes in the NHS will work?A quick summary on why I think we need to take action! Once these plans start to take hold we wont be able to do anything to alter them. The Five Year Forward Plan was produced by NHS England in 2014 (available online – and worth having a look at). This identifies the current problems in the NHS and proposes ways to solve them. One of the main aims is to provide Networks of Excellence. In theory the proposals look good but only if they apply to everyone. Of course this wont happen – the re-arrangement itself will cost a huge amount of money and money is not in endless supply. These Networks will only work if we make sure neuromuscular support is included within them.
This document went out to all health providers with the remit they produce their own five year plan to achieve these aims – Sustainability and Transformation Plans (STP). Whilst I understand these documents are not going public it is possible to either see them or propose through your GP Surgery they support Neuromuscular needs and requirements – the proposed plans will and currently are going out to Patient Participation Groups (PPG) at local surgeries for feedback. That feedback is so important and time is important too! To be part of the PPG you simply have to be a registered patient at the surgery. And if getting to the Surgery is difficult they often have a virtual Patient Participation Group.
The Scottish Muscle Managed Clinical Network and the South West Neuromuscular Operational Delivery Network have already proved it can be done. How we can help is to contact our Surgeries to promote the GP training module :-
<a href=”http://oldsite.musculardystrophyuk.org/information-for-professionals/health-professionals/training-and-professional-development/gp-e-learning-module/
and the alert cards :- http://oldsite.musculardystrophyuk.org/get-the-right-care-and-support/alert-cards-and-care-plans/alert-cards/
MDUK have done sterling work on the need for physiotherapy – and the difference it could make> here is a link to their recent efforts and to the template letter we can also send to our MP :-
http://oldsite.musculardystrophyuk.org/news/news/physiotherapy-provision-is-overstretched/. Of course if your MP happens to be a member of the Health Committee he/she could have a double whammy!
Reply To: Do you have an idea how the proposed changes in the NHS will work?I have conbtacted our surgery on these issues as I promised and as expected had no reply. I will keep trying to get an asnwer out of them . I do really admire your sterling work on this. It deserves much praise.
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! You are definitely doing your share too by highlighting the problems with your Surgery! Do they have a Patient Participation Group? If they do they may well have a Virtual Group that you could join – just another way of worming our way in so we can have our say!
Lesley
Reply To: Do you have an idea how the proposed changes in the NHS will work?Just a thought! We all know how much moves and changes cos beside the equipment etc. Who will be paying for the changes I wonder? Central Government or will it come out of the NHS budget?
Reply To: Do you have an idea how the proposed changes in the NHS will work?I think you will find that the changes will come out of ‘efficiency’ savings as usual. There can be no more increased efficiency without patients bearing the consequences. The squeeze on budgets has been relentless for decades unless yoou are in one of the ‘sexy’ parts of the NHS like A&E, paediatrics or cancer.
I have not received a reply to any of my emails to the surgery about a patient participation group. no surprise there. But I am taking number three daughter there this afternoon so I will ask directly.Mike
So many love songs, so little love.
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