PALS

Everyday living
1

Hi friends. Has anyone had the need to contact PALS? The MS nurse advised me to do that due to all my frustration with the NHS neuros.

If you have gone that route, how did it go and did it help at all?

luv POllx

2

Hi,

I had reson to complain to PALS over the way I was diagnosed with MS and the level of support I was offered following diagnosis.

I went to the PALS office at the hospital and we agreed I would email my experience to them.

I received a detailed apology from the matron of the MS nurses and an apology from the neurologist concerned. The document also detailed changes that would now be implemented. The matron called me at the start of the investigation and appologised. When the investigation was complete she asked me if I wanted a face to face chat, which we had after one of my appointments.

A friend of mine who is a Doctor encouraged me to complain to PALS because it is the best way to drive some change through the NHS.

Mark

3

Hi,

I had reson to complain to PALS over the way I was diagnosed with MS and the level of support I was offered following diagnosis.

I went to the PALS office at the hospital and we agreed I would email my experience to them.

I received a detailed apology from the matron of the MS nurses and an apology from the neurologist concerned. The document also detailed changes that would now be implemented. The matron called me at the start of the investigation and appologised. When the investigation was complete she asked me if I wanted a face to face chat, which we had after one of my appointments.

A friend of mine who is a Doctor encouraged me to complain to PALS because it is the best way to drive some change through the NHS.

Mark

4

Hi Poll I haven’t complained through pals myself but a few years ago I put in a complaint on behalf of one of the service users I worked with. He had severe learning difficulties and cerebral palsy and the way he was treated was disgusting, no hoists available in the whole of a very large hospital, nurses refused to give him his meds through his peg and expected the staff from the home who were supporting him to do this and the list went on. The outcome of the complaint was that a protocol was written up saying how he should be treated whenever he was admitted to hospital and there was a written apology. Please do complain Poll because everyone is entititled to the best care possible. Sorry fot the bit of a rant but it really infuriates me. Love Karen xx

5

Hello Poll

I am hell bent on not giving in iam currently in meetings with pals involving two healthcare trust over there neuros they are useless, apparently if you are still going through the diagnosis period then a neuro will adere to the mc donald criteria GOOD LUCK because of this i now dont qualify for treatment as you now need lesions and a pattern of relapses i have relapses but no lesions. So i am now in a legal wrangle over this as i have called in with a solicitor as to my rights to life as at the moment it is awfull and there is medical evidence saying yes there is a neuro disease and it is rapid but without lesions then it is not MS , so we are now at stand off due to the fact they wont investigate what else it is and my other hospital are saying yes you will your the neuros ARGGGGGG. Pals have been fab but even they have said some consultants are a law to themselves and change the rules if you complain so it is looking like a legal challenge.

Hazexx

6

Hi Haze, oh what a nightmare. You do right to stand (sorry, if you cant stand, I cant) your ground. But it is obviously causing you no end of stress.

Have you been told about other conditions they have looked for? Ive had tests for tropical Spastic Paraparesis, HIV, Sticky Blood Syndrome, plus others I cant remember now.

These bad neuros need to be brought to book, but I am afraid of getting a black mark on my notes.

luv Pollx

7

Thanks for the reply Karen. that was an awful story about the lad with CP.

I will think about going the PALS route if I get no joy from Dr Lily.

luv Pollx

8

Hi Mark, thankyou for sharing your experience with me (and everyone else too)

The outcome was really good.

Ill consider doing the same after Ive seen the Leeds man.

luv Pollx

9

I’ve complained to PALS twice (and as a nurse I always suggest to people if they are not happy to contact PALS). the first time was after a locum consultant neuro filled in my DVLA form without ever having met me and lost me my driving license. First I knew was when my license was revoked. My normal neuro and MS nurse helped me to get it back. Wish I had pushed harder to pay all my friends back for taking me to work twice a week for 7 weeks. More recently I complained regarding health visitor access as I had moved to a new area and not seen a health visitor for more than 5 months. When I moved my baby was just 5 months old. Took a couple of complaints to PALS to get to see one, and I am still not happy with their explanation as to why I didn’t see one. I’m still unhappy with the lack of support from them especially after telling them some days I can barely carry the baby upstairs. Don’t honestly think its worth persuing further though. As a result of my complaint they now run a baby clinic at my doctors surgery once a month which they did not do before.

10

Hi, what a palaver for you, eh?

It takes a lot of strength and determination to complain and see it through.

Good for you in how you did it.

I am not going to contact PALS yet. But if i am still dissatisfied with my treatment after I have seen Dr Lily, I will do.

At the mo` i am feeling positive about this forthcoming appointment.

luv Pollx