Campaign update – Success

As I wrote last week’s blog Success, I was aware of another success that I had obtained which was keeping the General Medicine and Autonomic Clinic at Derriford Hospital Plymouth open for at least another year and managing to keep Dr Fulton on n his position to run it. Obviously the success is not mine alone, many people were necessary to get us to this place, the members of the campaign group who were willing for their stories to be shared in print and on the television. Members writing to their MP’s ( members of Parliament ) to force action, plus a widespread email campaign to many people involved in all aspects of healthcare.

As part of the campaign one member managed to get Baroness Blackwood to raise a question in The House of Lords ( Parliaments upper chamber ). The Baroness also suffer’s from EDS and PoTS so knows how important it is for sufferers to have access to proper healthcare and the provision of clinics in the UK is woefully inadequate especially in the devolved nations, Wales, Scotland and Northern Ireland. This was an incredible achievement in itself to raise the campaign profile and get it mentioned for prosperity in Hansard ( the document that records all questions and answers in both houses).

We had some excellent coverage in Plymouths newspaper and their online presence. We had two journalists join the group, whilst the BBC’s coverage was poor with incorrect figures being presented as fact, they claimed a mere 200 patients would be without care when the actual figure for those in Derrifords catchment area was 1000-1500 and that was without all those who were dropped from Dr Fulton’s list in June 2020 who were not in the hospitals catchment area and have been left without a consultant. You can read  first article here. The second article when we knew the clinic had been saved for at least 12 months and Dr Fulton is taking a much needed break of two months, can be read here. The journalist Molly has been incredibly supportive of our campaign and has produced two excellent pieces that have held Derriford Hospital to account. Thank you to Rebecca for sharing her story and explaining why Dr Fulton is so important.

I am amazed that we have achieved all we have in the short space of time since the 26th March when I asked the question at the hospital trusts board meeting, to starting the group and producing a letter to be sent out to various different groups and people to publicise our campaign. Thanks to Carol who managed to wrangle my 6 page goodness knows how many words into a succinct 3 page punchy letter that was hard to ignore. It is a real shame despite contacting my own MP by post, by recorded delivery and by multiple emails he failed to respond or provide any help at all to our campaign. Yet there were Plymouth and surrounding area MP’s who were more than happy to roll up their sleeves and fight for their constituents and this wasn’t just based on political parties, we got cross party support. Which shows how effective a campaign can be if you can get people in power interested in it.

Sadly I am aware that as Dr Fulton is on a fixed term contract and this next year marks one commissioning cycle we may still very well be in the same position next year especially if long Covid sufferers have been forgotten. People with Long Covid seem to develop Dysautonomia more specifically PoTS. Having that to use as part of the campaign made it very relevant to the media and it also gave us the advantage with Derriford as closing the clinic would in effect mean they were withdrawing care from an emerging patient group.

The group will be staying on Facebook as long as it is needed, plus now it has turned into quite an effective local group for PoTS patients, which is another thing to be proud of.

At the moment I am still left without a hospital consultant, there is no one based at the largest hospital near me and Dr Fulton was my consultant until June 2020. He is hopeful that he will be able to treat patients who are out of area at some point in the future and I am keeping everything crossed for that. The main aim of the campaign has been achieved for the moment.

I can’t lie it has been pretty exhausting organising a campaign in the midst of a significant bereavement for my husband and his family. There have been days when it has felt like my world was imploding, where I was so exhausted that I couldn’t continue and then I would get a message out of the blue from a member of the campaign group thanking me for everything I had done and that gave me the strength to continue. I am happy we have got as far as we have in the space of a few months and that I now don’t have to be continually thinking about our next move as a campaign.

Campaign

How has another week passed by already? It’s crazy how quickly the weeks are going by.

On the 25th March I wrote https://themyastheniakid.com/2021/03/25/a-call-to-arms/ A call to arms,

never in my wildest dreams would I have believed that I am now spearheading a campaign to save the General Medicine / Autonomic Clinic at Derriford Hospital. What started off as a small group on Facebook now has over 200 members, the campaign has been featured on the local BBC news programme and also in the main Plymouth news paper. My thanks go out to those members who were good enough to speak to the journalists and put across their stories of how the clinic has helped them and how detrimental to their health it would be should it close.

Despite telling me on 26th March when my question was put to the Board of Trustee’s at the hospital that an announcement would be forthcoming mid April we are now mid May and we still have had no announcement from the hospital as to what it’s plans are. I have this week sent another email to the hospital asking for an update as over 1000 patients are worrying about the future of their care.

On 13th April I sent off around 30 plus emails to lots of different organisations and people who might be able to help. I even contacted the Health Secretary Matt Hancock and I am still yet to get a reply. My own MP has been emailed 3 times and is still yet to let me know what he is doing to help his constituents affected by this departments closure. It has been very time consuming and whilst I have been very grateful for the distraction at times I can’t help but feel guilty that Mr Myasthenia Kid has just lost his father and maybe I am not being present enough for him.

This week I have sent out a hard copy of the original email to my MP via recorded delivery in an attempt to spur him into action. I have also contacted my Doctors surgery as I wanted to ensure they were aware of the changes at Derriford and it isn’t just me that this impacts at the practice. Plus the gp surgeries will have a say in the clinics that are commissioned by the CCG and around 90% of general practitioners don’t understand what PoTS is or how to treat it. Plus most pharmaceutical treatments are consultant level drugs so can’t be prescribed by a gp without a hospital consultants say so. So it is vitally important for the Doctors of Devon and Cornwall to have someone they can consult with regarding the care of their patients.

It has been exhausting and frustrating in equal measure. Many people are too sick to fight for themselves and some people for whatever reason just don’t feel like they want to get involved despite being a member of the group. Which is sad, because if you can’t fight for yourself who is going to do it for you. I also feel a terrible weight of responsibility that if we can’t keep the clinic open in a meaningful way that I have failed. 

Many of the organisations that I have come into contact are too busy passing responsibility for the commissioning of the clinic onto others or they simply say not our problem. It is sad that very few organisations want to stand up and do the right thing by these patients. Without this clinic there will be many more hospital admissions, people being labelled with psychiatric diagnoses and people just not receiving the right treatment. Which is just disgraceful when figures show around 60+% will go back to normal levels of functioning with the right treatment.

The bureaucracy is a travesty, people are hiding behind policies or the fact there are no national treatment guidelines for PoTS / Autonomic Dysfunction meaning many people are already missing out on these treatments that could be life changing. With the advent of Covid and the condition Long Covid having an impact on the autonomic nervous system we need more clinics dealing with autonomic issues regardless of how they have come about, not less. No one seems to see this issue or they just pay lip service to it.

It seems that a lot of people in positions of power don’t care about other people’s suffering as long as they are ok. It is also sad that our elected representatives seem to forget we pay their wages. So they should be working for their constituents.

I won’t stop trying though, no matter how long it takes, I will get our voices heard.