"Jumped into a Rabbit Hole. Can I get out?"

I contacted the PE Team & submitted 7 questions.

In the response, the Chief Nurse only answered 4 of my 7 questions.

Nearly all of my questions had been edited.

In the previous written response (September 2020) no questions were edited.

Of the 4 questions they did answer, 1 confirms the previous response was misleading. It said frequent reports of a normal gait. Was used as hard evidence to deny my Blue Badge renewal. This Is in fact, One single report of a normal gait from 2016! They awarded my last Blue Badge in 2017. Some 6 months after visually observing my normal gait. I have had to ask in writing 3 times for this somewhat creepy assertion to be revealed for what it is. It was also a question that went unanswered as part of the formal complaint procedure phone call.

1 unanswered question was about trust. The Blue Badge NHS assessment directly conflicts with the assessment of at least one NHS Consultant - a Consultant who expertly treats me for a progressive, mobility limiting, inflammation inducing, painful, chronic condition. One that requires me to take Chemotherapy every week. Nearly 18 months & counting. A Consultant who supports any application I make for a Blue Badge.

These are all NHS professionals who have made assessments of my ability to function.

I believe they all can't be right.

NHS Lothian Information Governance claim my patient data is accurate.

I believe this assertion to be impossible.

They did not respond to comments I made about the covert farming of patient data. How this was generated, how it was used and how it impacted on my health. They didn’t acknowledge the impact it had on their own Rheumatology Department. I don't know if Rheumatology even know that concerns have been raised? Certainly, no one has contacted me about any of this.

My worry about engaging in all of this was HealthCare Professionals not giving straight replies to straight questions. This has now happened on several occasions. Each time I am told everything is robust. The slow reveal of evidence suggests otherwise.

In their assessment they acknowledge that it was obvious that I have issues with fatigue and pain intermittently affecting walking and difficulties associated with fatigue/pacing management. July 2020, this is true.

What they have repeatedly failed to address is the fact because of my symptoms, I am virtually unable to walk for 4/5/6 days out of 7. Every week.

Ironically, and this was one of the ignored questions. I can now explain that as a direct result of the Assessors interventions, I had no choice but to leave an NHS Lothian Fatigue and Pain Management Course before it had finished. A course I had been recruited onto which would specifically address issues with Fatigue & Pain intermittently affecting walking and difficulties with fatigue/pacing management.

Data generated as a result of me being recruited onto this course I believe was covertly accessed and used as part of their medical evidence. This would justify the decision denying me a renewal. I don't consider this evidence and feel it was hurtful conjecture.

So, by having the misfortune of being recruited and by participating in a course that was designed to improve the way I manage Pain & Fatigue, it has instead been made much worse.

As a result of this experience, I am also now for the 1st time in my life medicated for anxiety.

I was also referred to the Adult mental health team for outreach services and I await the appointment of a key worker.

My dependency on medication has increased. My dependency on more healthcare services has increased. My personal independence curtailed.

I was then told my GP was not contacted because they had sufficient evidence to deny my renewal. This in my opinion is neither holistic or fair. I assume that the renewal assessment gathered enough evidence to deny a renewal rather than gathering enough evidence to make an holistic judgement about what is best for me as the patient.

I do not believe there is evidence of any meaningful insight into what functioning difficulties you can expect from having:

Heart Disease – 5 stents.

Myalgic Encephalomyelitis

Osteo Arthritis – new left knee when pain dictates it.

Full Body Neuropathies – 24/7

Rheumatoid Arthritis – weekly chemo 18 months.

Post Lymes 2018.

At no point has anyone thought they should speak to me. Indeed, it feels to me that they have not spoken to each other.

I have said many times that I no longer want a Blue Badge. I cannot afford to align myself with HealthCare Professionals who are not aware of the issues & challenges my diseases force me to face every day. The thought of future assessments by these people is nauseating.

It’s just too dangerous.

The Assessors, The PE Team, The Complaints Procedure, The Information Governance Team & The Chief Nurse have all pointed me in the direction of the Ombudsman.

The repeatedly constant refusal to speak with the patient is a deafening silence.

Myalgic Encephalomyelitis is by far my most limiting disease. It is utterly devastating.

I am curious what the British Heart Foundation, ME Action Scotland or the National Rheumatoid Arthritis Society recommends.

Finally, I’d like to thank my friend who has Rheumatoid Arthritis. She has two dogs she walks in a wood, in all weathers, twice a day. She gets her Blue Badge in “the blink of an eye” and rightly so. She has managed to find the energy to help me out several times. Her Blue Badge has helped her do this and I am very grateful to her and the assessors who have rubber stamped her renewals for 15 years.

My experience does if nothing else, shine a light on the understated value of "Care Opinion."

An organisation that does provide a platform to those who have had their voices taken away.

And for that at least, I am very, very grateful.