Wheelchair Latest: The most unhelpful response ever?

Dear Reader,

We’re still struggling to make headway with Fran’s wheelchair.  It is difficult to do this due to lack of clarity on what exactly is required by way of evidence for the appeals process, and a process which itself it both fundamentally flawed and hopelessly outmoded.  The following is the full transcript of the CCG reply to my latest set of questions, designed to understand exactly what evidence is required:

Dear Dr Whitaker and Mrs Whitaker,

I am authorised to send you this response to your three specific questions on behalf of Mr Rob Murphy, Associate Director, Planned Care.

1.         In terms of Fran’s condition, I am unclear what is meant by the ‘normal population of patients with the same medical condition.’ As I explained, Patient’s impairment, Cerebral Palsy, covers a wide range of circumstances with the impact of the impairment manifesting itself in different ways.  It would be helpful to understand the specific criteria used to constitute the term ‘normal’ in this case so that we can gather evidence in this regard to enable the panel to consider this.  I appreciate that you yourself are not a clinician so would welcome advice from a clinician who sits on the panel in respect of this.

Response:  This refers to any other patient with cerebral palsy with similar physical disabilities.

What does this response actually mean?  How on earth are we supposed to get evidence comparing Fran to a hypothetical person that doesn’t exist…or is that the point?  This is response is really concerning as it a) shows no evidence of an understanding of cerebral palsy and b) provides no further clarification.

2. I am also unclear in terms of the panel not discriminating on age.  How is this consistent with the need to demonstrate the need to demonstrate clinical circumstances which are ‘at a similar stage of progression as the patient’ when, in the case of Cerebral Palsy, this would be causally linked to Fran’s age?

Response: This is taken out of context from the policy which states: The Commissioning Authority does not discriminate on grounds of sex, age, sexual orientation, ethnicity, educational level, employment, marital status or religion.

 If the stage of progression is causally linked to the Patient age, this would be the case in any similar patient.

So now we have to find someone who is effectively a twin of Fran for the purposes of comparison.  Where does this person exist?  If you know, please tell me.

3.         Lastly, you state that the Commissioning authority does not ‘generally make treatment for patient under its policies dependent on the patient’s personal or social circumstances.’  Please could you state what personal or social circumstances would constitute exceptional ones in this context?

Response: The Panel could not advise on what personal or social circumstances might be exceptional until presented with something felt to be in this category by the applicant.   It is up to the applicant to demonstrate exceptionality not for the Panel to presuppose what that could be.

We already have presented this evidence, which has been dismissed, on the basis that it was not considered ‘exceptional’ with no further reasoning for this given.  Again, there is no clarification here, meaning the panel is effectively hiding behind its discretion to take decisions based on a flawed understanding of Fran’s particular impairment.

To add to my concerns, I have researched the background of Mr Murphy, and he has a masters degree in Pharmacy.  Quite what basis this qualification provides to make decisions on  the case of someone with cerebral palsy, I know not.

I hope this is helpful.

Do you find this helpful dear reader?  We will follow the process, but I now have no confidence whatsoever in it.  It is clear that the people making decisions lack the understanding required to meaningfully assess Fran’s case.  Still, we persist, in the hope that, eventually, common sense will prevail.  The odds of this, however, seem increasingly remote.

The effects of having to negotiate a process such as this should also not go without a mention.  This process has, and continues to impact both Fran and I adversely in a number of ways.  We will not give up though.  It is clear that systemic changes are needed, and I am determined to continue to shed light on a process which is not fit for purpose and fails to meaningfully understand the people it is there to serve.

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