Incompetent MS Professonals at the NHS

Everyday living
1

Hello all,

I’ve not been on or posted recently, been too busy plodding on through day-to-day life. I am yet again totally utterly frustrated by the lack of support by my allocated NHS professionals. It is despicable.

I was approved to start DMDs in June 2012 by my new neuro in Birmingham. He advised me that I am not to contact him between appointments and should only use my MS nurse.

My injections (rebif) finally arrived the third week of September 2012. I had my training with my MS nurse as the reif nurse was off work following an operation.

I experienced the following (unrelenting) side effects from September 2012-December 2013:

  • Headaches, dizziness and eye pain
  • Severe shooting pains, usually around the joints for 6-8 hours after each injection. Joints remained sore and made walking difficult the next day
  • Sweating, fever and shivers for most of the night
  • Red, swollen, itchy injection sites which lasted 3-4 weeks. At one point I had 15 hive-like lumps

All of these meant I was losing 3 nights sleep a week. I was exhausted. This lead to knock on effects on my business, relationships and my social life.

I was told by my MS nurse to plod on regardless as she could not make changes until I had seen my neuro in August 2013.

In the first week of April 2013 I relapsed. My MS nurse was on holiday until early May. She has no cover when off. My GP would not prescribe steriods. My neuro would not take mine or my GPs calls. I as on my own. I ended up being hospitalised for a few days via A&E and was given IV meds on a ward. My MS nurse returned my calls mid May 2013 and said my GP should have helped me. She would write to my neuro so he was aware of hospitlisation and the severe side effects. She advised me that she will also now only be able to see me once a year so will see me February 2014 around 6 months after the neuro.

In August 2013 I saw my neuro who after a quick update chat (there was no letter on file frm MS nurse) said I could change to any DMD I wanted, I just had to tell my MS nurse at my next appointment (in 6 months time). He also told me to tell my GP about the “out of hours neurologist” shouldI relapse again. How is this my job?

After 16 months of torturous injections without support I decided to stop the DMDs altogether in mid December. The loss of quality of life (and 156 nights sleep a year) more than wipedout any potential benefit. I emailed my MS nurse to advise her on 11th December 2013- again to be met with her “out of office” reply.

I hve now felt like myself again for 2 weeks. It’s amazing.

I have today received a call frm my MS nurse in response to December’s email. She has cancelled all future rebif deliveries…oh and as I am now not receiving treatment I have been signed off from her…I now have no MS nurse and a neuro that sees me every 12-14 months and is not to be disturbed inbetween. This years appointment is the last week of September, what an f-ing joke.

Prior to my DX I had a lovely neuro who at least saw me quarterly. Whenever there was a change in symptoms he would order MRIs, FBC and would call to check on me. He gave me his email address should I need to get in touch with him with everything from questions to emergencies. When I had the relapse that lead to my DX I emailed him, within hours was sat opposite him whilst he prescribed the meds needed.

Since my DX I have had no scans, tests etc. I feel utterly negleted compared to before. If this normal? No monitoring after diagnosis?

Thankfully I am level headed, sensible and strong. Some people would not cope with this!!

2

I dont think your are alone, but I would complain to pals or swap hospitals. Your gp should refer you. I had awful problems on a betaferon bur didnt last anywhere as long as you so swaped to copaxone and I have no side effects. Good luck and let us know how it goes, its unsafe to be left like this and as you replased on rebif you may be eligable for gilyna the oral tablet.

3

Hi Zoe,

Is changing hospitals an option?

I asked neuro about gilyna when I saw him as MS nurse said I would be eligible and he said I wasn’t.

How often do you see neuro? MS nurse? Hadany MRIs or tests since DX?

Sx

4

Hello Sarahb

Is this a specialist neuro your seeing? he sounds useless. The MS nurse nurse doesn’t sound much better. Why not ask you gp to refer you to another neuro.

I went to see my neuro at York yesterday. I was diagnosed with primary progressive last august…my neuro is lovely…or he was!!

I’m now discharged!! No neuro, no MS nurse…actually I’ve only spoke once to an MS nurse, on the phone last year.

Because I’m not on DMDs, the CCG for York have decided my type of ms can be forgotten about. The consultant himself, told me he is not happy about it…his team fought hard to make the unit available for all types of ms sufferers. Its all about money, of course.

To be honest, I’m ok. I have a good gp and family support. I’m thinking about people who are in more vunerable situations.

I have no intention of keeping quiet…its not in my nature. Pretty soon, I’m going to be rattling a few cages

Good luck to you

5

He’s a specialist in MS in particular DMDs. I’ll probably be signed off him now too!!

Since last year and my GP refusing to help me I changed GP practices. So far my new GP i lovely, but not yet had to challenge him with anything major.

The only other MS specialist neuro in my area on the consultant directory has a reputation on here and with other local MS people. Makes me wonder if changing is a good idea!

Sx

6

He’s a specialist in MS in particular DMDs. I’ll probably be signed off him now too!!

Since last year and my GP refusing to help me I changed GP practices. So far my new GP i lovely, but not yet had to challenge him with anything major.

The only other MS specialist neuro in my area on the consultant directory has a reputation on here and with other local MS people. Makes me wonder if changing is a good idea!

Sx

7

1 - Complain to PALS. That is PALS for the hospital. They may not be able to resolve anything (sometimes they just hit a brick wall), but usally their very involvement does get some positive action.

2 - You have a right to change consultants. What you can do is to go through the websites of all the hospitals within easy reach of you, check the neurology departments, and note the names of all the MS Consultants. Now look at all the private hospitals around you and see where the neurologist(s) you dont want to see are working. Find one at a different NHS Hospital , and see him/her privately. They will usually then refer you to themselves at their NHS Hospital, particularly if your GP will support you.

From what you have said, your GP is on your side, and you may need them to do a referral to a private neuro.

Geoff

8

I was diagnosed in early November all my neuro at Wolverhampton told me was I’ve got to live with the symptoms no information in what the symptoms were nor was I told about a ms nurse I don’t even know if I have to contact a ms nurse myself or how or where or whether the ms nurse will contact me any advice will be welcome.

9

Hi Jonesbear, I am under Wolverhampton neuro too and was diagnosed with NMO (Devics) last October. Sounds like you are feeling a bit like me at the moment …lost! I had a follow up with them last week and couldn’t really gets straight answer out of the consultant just to consider the glass half full. Jo