Blog, medication

The Future of MS Care

So, I have just completed a questionnaire from the amazing ShiftMS forum. All about the future of MS care.

Basically the whole questionnaire was asking how I would feel if all the medical MS services I use were to stop being face-to-face and become telephone or online services. To say I was furious was an understatement.

(I would like to point out at this juncture that I am not criticising ShiftMS in any way. They help the NHS do research and are an incredible community for MS sufferers, they are just the messengers in this unfortunate tale).

My first inkling that there was talk of moving these services in a new direction was my yearly check up with my new MS Nurse in June. Quite rightly, due to Covid, this year it was a telephone call. It was quite a long conversation because my old Nurse had retired and this new Nurse was introducing herself and wanted to know my whole story. At the end of the phone call, the Nurse said: ‘For your next appointment in June 2022, would you like a face-to-face appointment or is another telephone call ok?’

I politely asked for a face-to-face appointment as I felt it would help our bonding as new patient/nurse if we met. (The bonding hadn’t been going very well up to this point…)

She replied that she could book a face-to-face appointment, but nearer the time, if I felt like it was unnecessary, then I could always ring up and ask to switch to a phone call instead. Not going to happen. She ended the call by saying that Covid had forced them into a new way of working (i.e. the phone calls) but it turned out it was a better way of running the department. No comment.

So I wasn’t totally surprised when I was being asked how I would feel if my Neurology Doctor’s appointment was a telephone call as well within this questionnaire.

I totally understand that some MS sufferers who have major mobility issues or have a really stressful journey to the hospital, would really appreciate having a phone call from the Doctor rather than struggling into a face-to-face appointment. For some, this would be the answer to so many difficulties. That’s fine, I totally get that.

But actually sitting in a room with a Doctor and having your worries listened to and answered is so beneficial to coping with this awful disease. I am so lucky that I have had 2 amazing Doctors on my MS journey. My first one was kind, proactive and told me everything was going to be alright when I really needed to hear it. My 2nd one takes the time to explain answers to the questions I have and won’t let me leave until I feel heard and understand what is happening.

Until I heard the words: ‘It is conclusive, you have MS.’ I had no previous experience or knowledge about it. So having medical professionals that I feel looked after by has been one of the main reasons I am still a functioning adult today. But a major part of that is seeing the Doctor face-to-face. Having that social interaction, a smile and a chuckle is so heart warming and confidence boosting, it is why as human beings, we seek human contact. It gives you a better experience when having to talk about your medical ailments, which let’s face it, with MS is not fun! It is not always about having access to knowledge. We have the Internet for that. It’s about the care delivered. You need to build a relationship with the person who is in charge of your care. MS is a life long disease, there needs to be trust between Doctor and patient. How can you build that trust on the phone?!

I only see my Doctor once a year, and my Nurse once a year. I don’t ring the Nurse service unless I absolutely have to, because I know there will be someone who really needs their help more than me. When the symptoms and sensations we feel are ever changing and often getting worse, I don’t think seeing a medical professional once a year is too much to ask.

If we only speak to the Doctor by phone, how are we going to do the dexterity test each year that tracks fine motor skills? How are we going to complete the 25m walk down the corridor, that assess walking aides and gross motor movement?

(Side note: Last time I was in the waiting room, waiting to do this test, a woman walked past me in a suit with killer heels on, walking on a mission down that corridor. She walked like a goddess and has become my 25m walk role model, I am going to complete it my best heels one day!!)

I know that after the Covid crisis, the NHS is in tatters and I am by no means bashing their incredible work. We all have a lot to thank them for. But if no one represents the patient viewpoint, then how can we have a reasoned discussion about the services we need?

We are not asking for more services, or more time, or more draining of resources. We just want to keep in place the help we already have to navigate a degenerative condition.

Fingers crossed, the right people hear our concerns.

Sarah xx

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