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. 

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