Update on Maggie.

[Whitefeather1]

Hi all, I thought I'd give an update on my friend. I've now got Maggie referred to our local hospice. Her GP wasn't too keen on this, calling her and asking " what do you hope to gain being referred ?" And also saying to her social worker " I don't know why she wants to be referred, she's not end of life " I was so annoyed!

Anyway, Maggie has had more support in the last two weeks from the hospice than what she's had in the past three years! A dietician has been in touch, as has an OT. Therapy is being arranged.

That's the good part, now this has happened

A PT called her ( who's Shes seen in past) telling her she can't help her any further and she wishes the hospice would stop referring people again!

Maggie had an appointment with a pain clinic last week as the pain in her neck and head ( head drop syndrome) has been horrendous for her since November. We got to the clinic with hospital transport, this is the first time Maggie had been out since November, to be told her appointment had been cancelled... the nurse was quite rude, telling us " She won't see you, we'll arrange another appointment..don't shoot the messenger " The energy it took out of her to make that appointment ... unbelievable!

Anyway, a complaint had been made and another appointment made. MSA trust are writing to the GP too who has also refused to give a home visit.

Sometimes I feel like I'm fighting a battle to get the help and care she needs. I'm not medically trained, I've learnt more from my own research than we've been informed by anyone in the medical profession 🥺

On the plus side, the hospice have been amazing!

Sorry for the rant!

Caroline x

[FredaE]

there's no blame in not knowing about MSA but it is a disgrace to be so proud of it. Have you had the standard lecture on not believing everything you read on google ? i'm afraid that GPs are either worth their weight in gold or too dear at any price ....postcode lottery

[chester2107]

you would think the gp or hospital would want to know about conditions like MSA to help people ?

the hospital my dad was in had some knowledge, but i had to keep telling them that he hadn’t had a stroke and he couldn’t speak very well , our doctor had knowledge as his sister in law had it , which made everything much easier

good for the hospice being so caring

and for you looking after your friend

elaine xx

[Whitefeather1 in reply to chester2107]

you would think so! I think we've had one paramedic who had to come to Maggie, I had to enlighten him on the symptoms etc , he came again and had read up on them condition . ( was supposed to come again but we haven't seen him for three weeks 🙄)

[chester2107 in reply to Whitefeather1]

that’s a shame, it’s about time doctors knew more about it , i know it’s rare , but i’ve met 2 or 3 people just generally who’ve relatives have had /got it x

[MF31]

I totally see where your coming from we are at the stage where it takes so much energy to be able to get him to appointment and that is for both of us, I am lucky I have carers come to shower him in morning and get him undressed for bed we hoist but I am just going to have to go to hospital transport and actually dreading it because if there long waiting time to be picked up it will completely wear him out as sleeping a lot of the time now and will want to get home.

[sittingontheprom]

Caroline- My wife started with MSA in late 2016 , although we only had a firm diagnosis several months later ! All due to lack of knowledge in our local health personnel, we had to pay to see a neurologist as an NHS appointment was months away. It was our best decision - the doctor told me to study the MSA and the Parkinson's websites from back to front as I would need the info to understand what we would be facing how true !!!

How lucky to have a friend like you Caroline😇

[Derkie54]

What a nice friend you are supporting Maggie. 😊

[TK-67]

so pleased to hear this - it makes me so cross though to hear the reaction that hospices are only for end of life, so wish the value of good palliative care was fully appreciated and funded! I remember too the consultant who diagnosed mum telling me to google MSA as he just didn't have anything he could do for her! 30 miles away was a consultant who was an expert, needless to say I tracked her down. Her focus was always on quality of life. Over the 3 years mum had with the disease, I lost count of the amount of times I had to 'shout' about MSA and the battle it is. The only places we got good help initially was the local hospice and the MSA Trust. Everyone else was as you'd found unhelpful or dismissive. It does seem that unless you know someone else with MSA it's just too difficult for some health professionals. I'm very proud I never stopped shouting for mum...! And that I know a lot about this disease!

Ranting helps by the way...its important for carers to be recognised and the impact having to advocate for those we care about has on us. I didn't ever do anything to be 'difficult' it was always about mum's quality of life. I'm sure a lot of those who are difficult or dismissive wouldn't be if one of their loved ones was diagnosed with a rare condition and came up against what we have to.

[Whitefeather1 in reply to TK-67]

We're going to start taking MSA booklets when we go to appointments. I'm truly astounded with lack of knowledge of this dreadful disease.

I've started to think about what I can do to raise awareness.....

Awareness is desperately needed, I know it's rare but it's bloody horrid!

[TK-67 in reply to Whitefeather1]

it’s about all rare conditions sadly, I have just been diagnosed with one, thankfully not as awful as MSA but awareness is also lacking which just means yet again I’m back to having to ‘shout’ and deal with the lack of knowledge.

I produced a document for mum which was about ‘her MSA’, sadly health professionals will also assume everyone is the same when we know one of the main challenges is now everyone is different.

It’s so challenging and exhausting.

[Monkeyfeet1]

I’m pleased you’re making progress x