Letters To My Doctor: The CCG (Care Commissioning Group)

Withdraw Application For Funds

Dear effective use of resources,                                                                              CC:

Following on from a conversation with (xxxxx) today I have reflected and wish to withdraw my request for funds ref:

This is because the process itself is becoming extremely detrimental to my mental wellbeing.

The requirement to send information in regard to my circumstances, with little support from my GP, waiting for outcomes and discussing next steps is extremely distressing and further feeds the fear, anxiety and upset I have faced, as a consequence of the experiences I have had, for the last three years.

I require therapy, not for my extreme presentation of postpartum and on-going thyroiditis (and this is difficult in itself) but because of how I have been treated at the hands of the system and the distress this has caused. 

In the context of my current healthcare needs it is important for me to protect myself from hearing ‘no’ again. This is initially why I sought (name’s) support because being repeatedly told that I would not be cared for (referrals to healthy minds and psychological medicine and then redirected to my GP to ‘try and push for a referral’ – by an institution that seemingly cares for everyone else is a very difficult place to be. 

The difference or unique quality in (name’s) care was that she was happy to council me – she did not decline me – at the time I wasn’t looking for a specific expertise I was just looking for someone to help me. She listened to me and believed my experiences of my symptoms when many others told me ‘it was all in my head.’ Her qualifications speak for themselves and her expertise has saved me.

I know that my GP cannot provide the information that is required because I have reviewed my notes and they are an utterly inaccurate depiction of the journey that I have been on. I have raised this in several other forums but to no avail. I have also written letters to my surgery – there has been no response. Also, how can they truly explain the reason that I require support? This would mean acknowledging their failings – something I am certain they have not translated via this process.

For context, It may also be helpful to note that the GP has not been proactive in applying for this funding. It is I who found out about the EUR and I who asked the GP and practice to apply on my behalf; I have no idea how the GP feels in regard to my need for therapy, I have not been supported by them. I have no advocate.  

(Name) has previously provided letters re: how she experiences me in therapy, but they are not used by my GP to direct the care I receive, and I would not be surprised if they have not been shared here.

So the basis of a decision is being made about myself (a person) without a full picture and unfortunately, right now, I am not strong enough to provide the full picture (I engaged with mental health services several times prior to the referrals I describe above to no avail.) The fact that discussions have taken place by the CCG, about what is best for me, without the proper information feels uncomfortable – what about the patient’s voice? This is what has been missing in my own care since the onset of this traumatic journey.  I am especially disheartened to have spoken at the CCG (only a brief chapter of my story) where my voice seemingly mattered and promises were made.

The reason I cannot fund my therapy is because my employment has been sporadic, this has been sporadic because my condition has been at best mismanaged and at worst ignored. I have spent £1000’s on my own care, my family are financially struggling.

Only last week my surgery refused to carry out vital bloodwork, even with follow up instruction from the professor (NHS) whose care I am under (I did a lot of work alone to find this care.) I was just told no, with no reason why and no alternative options. My symptoms are torturous and clinical information is required when I am symptomatic  to keep me safe whilst on medication and decide a next course of action (again there is lots of detail here) so I felt I was left with little choice but to ‘pay’ £350 (credit card?!) to have my bloods drawn privately. I now have expertise behind me but still cannot access care! This on-going situation and feeling so isolated and alone in terms of care and support is why I see (name.)   

I cannot re-tell this story again, to a therapist who may or may not be a good fit for my healthcare needs – in the same way that I know this process is detrimental, I also know that repeatedly telling my story is detrimental.

I am in this situation because I was misdiagnosed, not heard and failed by an institution that I pay into, that is there to care for and support me. I am doing all of this in the context of dealing with a debilitating condition and I cannot do it anymore. I cannot fight for care and be told repeatedly ‘no,’ a real catch 22 – to get what I need I must do what harms me the most.

I know myself and my body and I know what I need, and it is to no longer engage in this process so as requested please withdraw my application for funds.

Regards

*The decision about funding had gone to panel twice over a period of 8 months, I was told there had been a discussion and recommendations made about the type of therapy I needed – based on very minimal info from my GP and never having met me. A case worker persuaded me to not withdraw because she felt at the next panel support would be agreed – which it was.