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Difficulties with MS support services

I’m very frustrated with the “care” I have been receiving in Hertfordshire (I see my neuro at Hemel Hempstead hospital), and I’d like to know if anyone else is experiencing difficulties. Happy to talk off board if you want to message me.

Many thanks

Sarah

Hi Sarah,

I go to the MS Clinic at Ashford St Peter’s, Surrey.

It’s very good, treatment wise, but no hugs and hand holding.

What’s the problem?

Fay

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Hi,

I must say I share your frustration.

The hospital, Charing Cross, I have been going to for 8 years on tysabri and have recently had issues with the MS hug! When I emailed/rang to tell them and was asked what I wanted them to do. This was a brand new symptom which was excruciatingly painful and made me struggle for breath. I was fobbed off essentially. I had the same experience when I went to A&E - once any heart attack/stroke/embolism had been ruled out, I was sent packing without so much as a discharge note - despite having pain on breathing.

Essentially - I’m guessing it’s the MS Hug - no one has told me that’s what it is, no one has advised me what do to or offered any form of treatment.

Charing Cross seem so overworked (and some are downright incompetent) that i struggle to get meetings with the consultant, feel nothing is ever relayed to the consultant, MRI’s are left to the patients to remind staff to book them and then good luck getting the results (of that or the JC virus indexing - I’m positive). The lack of support is terrifying to be honest.

The whole experience has left me so frustrated and as though there is no where to turn! My community MS nurse is lovely but essentially advised physio and going back to the GP repeatedly until I had a resolution. The issue there being that the GP doesn’t like treating the MS as that’s what Charing Cross are for.

Sorry for rabbiting on but just wanted you to know you are not alone in your frustration :slight_smile:

Sarah

Feel I’m not getting anywhere with a particular problem, and being pushed from pillar to post. Difficult to go into here.

Thank you for replying

Sarah

I’m very sorry to hear that. I have an ongoing problem with worsening neck pain, extending down my arm, worse on walking. No pain relief touches it, and I’ve been told to increase my Amitriptyline and get my GP to refer me for physio. I can move my neck perfectly OK, it just hurts deep down and at the base of my skull. I’m at my wit’s end.

(Yes, I said I wasn’t going to go into detail, but what the hell!)

Sarah

Is your problem more - unrealistic expectations of the NHS when having an incurable disease?

Basically having a nasty symptom which has no treatment.

I have no problem managing my SPMS.

I know the symptoms thanks to the MS Trust and tell my GP what I need

and point to the web site: Treating MS symptoms https://www.mstrust.org.uk/a-z/treating-ms-symptoms

Or http://www.nhs.uk/Conditions/Multiple-Sclerosis/Pages/Introduction.aspx

The MS hug is awful, but gets better after about a month or so. I’ve had three bad episodes.

I’ve got an electric bed, so I put it in the sitting up position to ease my breathing.

The problem with MS is most of the symptoms, which are distressing, are untreatable

and either will or won’t improve by themselves with time.

Fay

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I don’t have the Hug, and I totally get that the NHS is stretched beyond its capacity. I’ve had MS now for 14 years, I know the drill. What I find frustrating is the indifference, along with handing my care to my GP who doesn’t want the responsibility - leaving me with no care.

“indifference” "no care"

Don’t you have a care plan?

GPs or MS Nurses can write one for you.

Are you in contact with the Community Rehab Team?

Is it more social care you need?

Specifically - what do you need?

Fay

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It’s worth checking GP practices - perhaps change your GP

https://gp-patient.co.uk/

Perhaps this is a London cultural problem:

“indifference” "no care"

I live in a small village, and attend a small GP practice, where I get excellent care.

I have no issues re. “indifference” "no care".

Fay

My team in London are excellent

Hemel Hempstead Hospital is not an MS centre - perhaps that’s the problem.

http://www.nhs.uk/Services/hospitals/Services/Service/DefaultView.aspx?id=194135

Find another neuro - https://www.mssociety.org.uk/near-me/specialists

You could try an MS Therapy Centre http://www.msntc.org.uk/

Good luck.

Thank you for all your posts. I think it just depends on where you live; a “care plan” has never been mentioned to me over the last 14 years. My GP service is stretched and changing to another one in the area wouldn’t make a difference (all surgeries aren’t taking on new patients due to lack of resources). It can take 3 weeks to get an appointment. They are unwilling to take on the vagaries of MS when it’s something they don’t fully understand; if I ever go to them with an MS related issue, they defer to my neuro or MS nurse. But this is also where it falls down - neither wants to work with the other.

Once again, thank you for your help and I will perhaps try to change neuro, instead of GP.

Sarah

Older folk and people with neuro diseases like MS have a right to a Care Plan - and GPs are contracted to do them. MS

Nurses can do them for you too.

You can book a 30 min appointment to get one done. It includes details about anyone who gives you support or care.

My Care Plan concluded: that I now needed some home adaptations, a powerchair, a bath lift, the Community Rehab Team,

extra physio, a medication review etc.,. and social activity to improve my low mood.

Ask your GP or MS Nurse about it.

All the best.

Fay

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