Consultant refuses report to Pension

[Arcadian]

For the past 12 months, I've been trying to find where I stand with my previous employer's pension and my MND diagnosis / symptoms...

I have this week noticed a letter in my NHS online App, that the Consultant Neurologist has refused to give a medical report on my condition to the Doctor who acts on behalf of my previous empoloyer and Pension Fund.

Is this normal?

Obviously I'm in limbo with my Pension access now regarding their catagories of 'partial' 'total' 'terminal'.

My GP tends to defer to the MND MDT Clinic, so they aren't in a great position to give clear detail specific to my MND aspects.

[GeoffBeale]

that the Consultant Neurologist has refused to give a medical report on my condition to the Doctor who acts on behalf of my previous empoloyer and Pension Fund.

I could be wrong, of course, but my natural cynicism suggests he would do it in a heartbeat if you paid him.

[Arcadian]

GeoffBeale - He's entitled to charge a flat fee to the employer who is seeking the report (from what I understand from GMC guidance).

My Crohn’s Disease Consultant a couple of years ago, when I failed my offshore medical and the Company Doctor was guiding HR on redeployment / future.
He asked if I could remind the employer that his fee hadn't been paid some months later.

[Ellie]

... the Consultant Neurologist has refused to give a medical report on my condition to the Doctor who acts on behalf of my previous empoloyer and Pension Fund.

Is this normal?

It is outrageous, however normal or abnormal the practice is...

You're correct in saying that the Consultant doesn't provide the report for free and I would in the first instance contact said Consultant to ask why they won't give the medical report - there might be a logical explanation for the refusal - and, if you don't get anywhere, go through PALS.

As an aside, have you ever tried to/felt the need to request copies of all/any of your patient records? xx

[KimB]

I found it easier to get my own medical records and forward them to pension, long-term disability, and Social Security. I did this all when I was first diagnosed and it was a full-time job considering I was still working as a college professor. Thank goodness for office hours.

Things shouldn't be so difficult but I can't think of anywhere in the world where it's easy.

[Arcadian]

Cheers Ellie & KimB
I had a chat with various people at the MDT Clinic on the phone, Secretary confirms he doesn't do reports (but they were uncomfortable with situation I've been left in).

Specialist Nurse got in touch and has generated an overview letter in her professional capacity in a 'to whom it may concern'.
Apparently the Consultant reluctance to engage is because Insurance and Pension Providers want a clear prognosis (which wasn't what was asked in my situation).
My previous employer is a global mega-corp with their own retained medical staff and Doctors, with a Chief Medical Officer in the London HQ (my previous job had a medical dependant requirement beyond an average job / level of fitness).

I have also raised the issue with the Hospital PALS for review.

I have drafted a 'sensible' letter to my GP, who is already aware I'm not geting answers on additional ambiguities from the MND MDT Clinic.
This is significantly impacting my outlook on future decisions and priorities / finances.

I've suggested in my GP letter, regarding the aspects I find unresolved (and have mentioned elsewhere on this forum over the last 18 months and with great respect to folks with greater experience who have replied), that my relationship with the Consultant has irreversibly deteriorated and that my other complex health issues seem to be deprioritised, since being on an 'end of life care plan'. This is on top of no additional symptoms monitoring over the last 12 months (discounting respiratory risk that was found to be Asthma and improving health since Corticosteroids).

I have requested my GP to consider referral to a different hospital and Consultant and start from a second opinion.

I had a positive conversation around this with the MND Specialist Nurse, who was concerned that leaving their Clinic would leave me without MND care resources for now.

I have not done this lightly, when accessing my medical records which are 'disjointed' between various hospitals, there are concerning omissions and other test results - (eg. spinal stenosis, cervical impingement, autoimmune inflammatory), that have a concerning symptom overlap.

I've had about 8 months of progressively improving health, activity and exertion, a noticeable number of sensation symptoms (arm tremor, limb pain) have dropped off.
Bowel and bladder symptoms and occasional blurred vision are slightly worse.
The Doctors / Consultants I've seen for secondary issues have tended to comment "That's unusual" or "That's not typical with MND"
I'm doing things now that I couldn't physically do 9 to 12 months ago.

[Arcadian]

Second opinion referral and possible future care now provisionally arranged at a different MND MDT Clinic.
Informal conversation was open, positive and practical.

[Ellie]

Arcadian A productive 24hrs 👍👍

No harm to bring a hard copy of a bullet point timeline of symptoms along with pointed remarks and questions for the new neurologist - wishing you the best in your endeavours. xx

[JamesW]

I’m not sure if this is useful or not but when I was diagnosed (age 46) I made use of a decent independent financial advisor who moved my pensions into a fund (Royal London) that he had ascertained beforehand would be sympathetic to my situation in taking a pension prior to the age of 55. I think we have had to provide for them is a confirmation of my diagnosis.

[Arcadian]

Cheers JamesW I've had partial access to my Pension from Age 46 due to an unrelated incurable (non-life threatening) illness.
Previous company Occupational Health wanted an update relative to my MND situation (not necessarily a pension catagory change). Consequently they can't adequately reassess / review without additional dialogue.