A suggestion on how to cope with 'telling people'

[Tigermoth]

I was writing to another newly-diagnosed person just now and thought MAYBE that this could be of interest to others too.
a suggestion on how to cope with 'having to tell people'- I'm still practising after 6 months, and have got a really useful hint to share!

Ask your Neurologist to do a 1 page letter 'to whom it may concern', that summarises the main features of your OT condition and its impact on your life.

I Gave my Neurologist a list of the things that have most impact on my daily and working life (fatigue etc). He then used this information both to put into my medical notes, and to draft the letter. There are things that are not in the textbooks that we need to have on record (eg trunk tremors on sitting, freezing when rising with outstretched arms).

We have the excuse that OT is incredibly rare as an opportunity to 'brief' someone on how it affects us (and that it is currently chronic and incurable). I've found that people are happy to read one page from a specialist, even if they are also in the 'medical profession'.

I have now used my letter 8 times in the last two weeks. (I'm doing disability registration etc). It also helps when you meet an old friend, for example, and are faced with explaining what's going on- it can help prevent well-meaning questions that are just plain upsetting.

[admin]

great idea! thank you.

I created a link and placed this into the "things that help" area of the forum.

[Tigermoth]

I wondered if people might find a pro-forma version of the 'list' helpful. So they can customise it to give to their doctor/neurologist and politely ask that they turn it into an official letter for agencies and/or short-cut to all the questions you have to deal with every time!!

What do you reckon?

[admin]

That sounds like a good idea. At the very least it could be used as a base to build upon.

I haven't looked, but possibly there is an existing form that could be modified.

[DEEmou]

I too think this is a fabulous idea, even my own doctor couldn't explain it to me as he admitted he knew nothing about O.T, my neurologist although very good in being able to put my symptoms , follow up with tests and put everything together AND figuring out what I had didn't explain it, I'm due to have an appointment next month to my place of EMPLOYMENT H.Q and it would be such a help to have something like an official letter as I got very tearful at my last meeting I had with O.H. kEEP UP WITH YOUR WONDERFUL WORK AND ADVICE it is so valuable DEE.

[Tigermoth]

that's exactly the sort of situation that it has helped me to have a 1 page summary (might go to 2!)

I took it in two stages, first of all I gave a list of my experience of OT to my neurologist and then he made his own (MUCH BETTER, he did a brilliant job) 1 page version that I now use as a 'to whom it may concern' letter.

Maybe when Gloria spells out the proforma that might already be around, we can take it from there?

[admin]

Hi Tigermoth

It would be great if you could develop a format and structure that would make it easier for the neurologists and general physicians use as a base. This could be posted on the resource page of the OT website.

Below is a document that was created by the National MS Society. The symptoms would need to be adapted to OT. Also, this letter is intended to be sent to the Social Security Agency (USA), there may be specific requirements for the UK, and other countries.

best regards

Jeff (admin)

Sample Physician-to-SSA Letter
This sample letter is designed as a guide to help you draft a personalized medical report documenting physical impairment.


[Doctor’s Name] [Street Address] [City, ST ZIP] [DATE]
[Recipient Name] [Title] [Company Name] [Street Address] [City, ST ZIP] Re: [Patient Name; Date of Birth; SSN]

To Whom It May Concern:

My patient [NAME] has [MS diagnosis and relevant condition] that is severe. [HE or SHE] is limited in daily activities and is unable to work on a sustained basis. My findings have been confirmed through physical examination, medical history, magnetic resonance imaging, and standard neurological examination, including evaluations of strength, spasticity, coordination, gait, sensation, vision, and mental status. [NAME’s] symptoms include [FULL LIST OF SYMPTOMS AND ANY ASSISTANCE DEVICES].

Describe the severity of the MS diagnosis, onset of symptoms, the course and nature of the condition, and side effects of treatment over time. Reference medical evidence.

Include details of all impairments related to MS, the progression and severity of impairments and any related symptom(s), and all other conditions, making specific reference to the SSA criteria for evaluating impairment.

Reference medical records you are submitting to SSA, but don’t duplicate the information here. Include clinical and laboratory findings and a detailed information on the claimant’s ability to function. Describe the medical history, specific tests used, lab results, and relevant clinical findings. Include that the individual is compliant with prescribed medical treatments.

Detail how physical, visual, and cognitive impairments impact the person’s ability to participate in daily activities and work on a sustained basis. Reference restrictions on sitting, standing, walking, extremity use, concentration, memory, persistence, or pace.
Always report fatigue and its limited impact. Because fatigue is difficult to measure objectively, provide any supporting evidence you have.

In my opinion, [NAME] is unable to resume any type of gainful employment due to physical impairment. MS is a progressive neurological disorder, and while disability can be delayed with treatment, there is not a cure. My expectation is that [NAME] will see a continued decline in function over time.

Sincerely,

[Tigermoth]

Hey Jeff, Thanks so much for the template and your thoughts.
Great to see your letter/draft from the MS community. They tackled the same issue, clearly.
Super-late here in London, UK.
My own version was way simpler, but I'm sure people can take the best from all potential 'to whom it may concern' contributions?
Look forward to looking at it properly next day or two.
all best,
Mairi

[gloria]

Hi! Tigermoth(Mairi): I must say that you are brillant to have found a way to cope with 'telling people'...........Look forward to your much needed continuing helping hand , Thanks, Gloria