Meeting Nurse and DMD Doctor for the first time

Dear Forum Readers,

This is my second post having tested the waters on 5 September (From regular to MS in two months… )

Thank you for the warm welcome and helpful advice I received then. I have lurked since and life is returning to normal and with it some questions.

I returned to work three weeks ago on a phased return. The first two weeks I eased myself back into work and in the third completed a normal working week. My initial symptoms have improved greatly over these three weeks and a stranger wouldn’t know I had been ill. Some symptoms remain but they aren’t prominent and only have a minor effect on my day-to-day activities.

I’ve not told my employer but plan to once I have something official in writing. My employer has been understanding and although I can continue as before believe they’ll be open to changes in my working practice or routine if necessary to ensure they get the best out for me with the least amount of disruption.

Is there any advice out there on how to manage the employer/employee relationship. Should you tell if you don’t need to? Does a diagnosis provide any protection for future episodes or medical commitments?

I’m due to meet an MS nurse for the first time next week. Is there anything I should ask of the nurse, such as a contact email address or arrange follow up appointments? Or should you just wait until you need help and wait for an appointment?.

I am meeting with a doctor from the disease modifying drugs section the following week. The nurse says they’ll (the nurse) arrange an appointment soon afterwards to talk about whatever arises from the disease modifying drugs appointment.

Finally my GP’s practice has invited me to have the annual flu jab. I’ve never had flu, not the proper one, or a ‘old style’ cold. Is it wise to have one or do all active patients get sent one automatically?

Best wishes,

Peter Brookes

Hi Peter.

Glad to hear you’re improving.

You don’t have to tell your employer, but I always think it’s best to. MS is covered by the Equality Act. This means a whole lot of stuff (I recommend you read up), but with regard to your questions, I believe that hospital appointments and time off because of relapses are not counted as sick leave, plus your employer has to make “reasonable adjustments” to support you continuing to work. I’ve never read the Equality Act, so I am far from an expert, so please check it out for yourself.

The most important thing about your meeting with your MS nurse is to get contact details, ideally a phone number AND an email address. Some nurses have regular appointments. Some even do regular home visits. Most work on a “call me if you need me” system though.

The disease modifying drugs (DMDs) discussion may go better if you look at the msdecisions website beforehand. It has loads of information about the available choices and their pros and cons. There are criteria for who is eligible for DMDs. These can be found in the NICE CG8 full guidelines for multiple sclerosis (free to download). For the interferons and Copaxone they are:
• can walk 100 metres or more without assistance
• have had at least two clinically significant relapses in the past two years
• are aged 18 years or older
• do not have contraindications (see specific summary of product characteristics (SPC) for details).

DMDs reduce the number of relapses by 30% on average. Doesn’t sound a lot, but if the one in three you don’t get is a biggie, then it is well worth it! They also reduce the severity of the relapses that do get through. They also delay the onset of progression when started early. Neuros prescribe DMDs, but MS nurses organise them, so I guess that’s why you need to see the nurse after seeing the doctor.

I recommend the flu jab. There are minimal if any side effects and the flu is bad news for MSers. It can significantly worsen symptoms and is well worth avoiding!


Karen x

Peter_Brookes wrote:
Is there any advice out there on how to manage the employer/employee relationship. Should you tell if you don't need to? Does a diagnosis provide any protection for future episodes or medical commitments?
Oh yes Peter, One 'good' :roll: thing about a dx of MS is that it is covered by the disability act. You should be able to argue that any time off required to attend a medical appt you have directly related to MS should be given to you on request and not counted as either AL or SL. I am also given to undrstand that whils further episodes of MS which lead to sickness cannot be counted under your company sickness policy where it touches on disciplinary action through time absent although they count it when it comes to SSP :(Clarexxx