Hi
My name is Debbie, my husband has been diagnosed with MS he was rushed into hospital last December with breathing difficulties and he lost the use of his legs, arms and hands, he spent nearly 5 weeks in hospital not being able to walk or move without assistance while in hospital he got 2 very large pressure sores on his bottom because he couldn’t move and the nurses didn’t think to put him on an air flow mattress until the sores got infected this took for ever to heal, he also got pneumonia and a few other symptoms which they managed to get under control, he has had numerous scans, lumbar punctures and biopsies which the consultant said he has definitely got ms this was back in may, since then we haven’t heard anything from the hospital at all regarding treatment we have tried to contact the hospital but to no avail. This has been nearly a year, has anyone else had to wait this long for diagnosis or treatment. It just seems to me that you are left to get on with it.
That sounds dreadful for you both – I am so sorry. I do know how soul-destroying it can feel trying to get proper care from system that is there to provide it but isn’t doing so. The GP should be your friend here. If you have a good one, he or she will try to help you navigate, but I’m afraid some of them just don’t want to know. I wish things were easier for you.
Thank you g go or your concern, I think you are right about the gp they don’t want to know and we have tried to contact the consultant and the ms team but can’t get through, I really don’t think it’s fair for anyone to have to wait for any treatment, it’s playing with people’s lives.
Absolutely not! I would do everything possible to chase this up. Phone calls, e-mails, letters with dates and details. If you can remember the name of the consultant then contact his/ her secretary.
Basically don’t be afraid of making a nuisance of yourself until you get some clear answers and ways forward. I suspect that someone owes you both an apology
I’m really sorry to hear that your husband isn’t getting the support or treatment he obviously needs.
I would report the lack of care and treatment to PALS.
I would also email your GP surgery and if you have one your husband’s MS nurse.
If you dont have one contact your Neurologist secretary by phone and email.
You shouldn’t have to do this but you need to advocate for your husband.
The sooner treatment begins the better the outcome.
Please take care both of you and do let us know how you are getting on.
A wise friend has recently suggested: If you aren’t getting anywhere, write a letter to the consultant. Not a phone call, not an email, a physical letter. She also marks the envelope private and confidential. She claims to have had a good success with this over the years.
If you need to be annoying, go for it. If you Google your local NHS neurology services you might find MS nurses. In my experience if you can make contact with a good one they can be really good advocates, able to ask questions and share info. I wish both of you all the best and hope you get some support soon.
Mick