Thank you everyone

[Gardening51]

Thank you so much for replying to my first post; I already feel less alone. Queen Square is totally chaotic, they don't treat you with kindness, and they don't do what they say they will. I have had nothing from the hospital - no referrals to any kind of therapy or support. They haven't written to my GP so she "officially" doesn't know what's wrong with me. I have paid for private speech and neuro-physio. Excuse the rant, but the hassle at the hospital makes me feel a lot worse about everything.

But enough of that; the sun is shining today and I've found new friends on this forum. Thank you again, I hope everyone has the best day they can.

[Kevin_1]

Gosh! That is so unlike the Queen Square I know. I suggest you telephone and talk to the Consultants secretary and ask if you can get more tests to help with diagnosis. They should respond to that.

I missed your last thread, sorry, but...

Speak with your GP and get a referral for neuro-physio and Speech therapy. These should be available on the NHS. I would also ask for a Social Services needs assessment and a Carers Assessment. This will get you onto the system and the least that will come out of these is plenty of information re. local resources. It should also result in you being referred to Occupational Health who will assess any equipment needs which they will loan to you. Later you will be able to contact Oc. Health directly as needs increase.

I do hope this helps a little.

Best to you

Kevin

[Gardening51 in reply to Kevin_1]

Thank you for the advice. It's good, except the consulant's secretary is as bad as the rest of them - I have great difficulty speaking on the phone so prefer email. Either she doesn't answer at all, or she answers what she thinks you should have asked. And doesn't pass on questions to the Prof. But it's SO good to be able to have a moan here, I feel a whole lot better. Thank you.

[Kevin_1 in reply to Gardening51]

I hear you.

However as an ex-NHS employee I wouldpoin out that if you mark your email to be forwarded to the Prof. she has to do that.

Are we talking about Prof. Hughes here? This sounds so unlike his ship.

Any way - greetings and a belated welcome to you.

All the best

Kevin

[Gardening51 in reply to Kevin_1]

Hello again

No, my consultant is Prof Morris. Saw him last Monday and after a lot of verbal fencing he finally admitted that the hospital is an admin disaster. So I asked him to email me there and then the missing letters and delivered them to my GP myself. As he can't do anything for me in the way of treatment, I should at least be able to be dealt with kindly and accurately Instead, I'm fire-fighting all the time. But hey, it keeps me out of mischief.

[Kevin_1 in reply to Gardening51]

Hi Gardening

I'm glad you got that sorted out. He used to have a superb secretary. I would phone her about something and often got a response same or next day.

Though there is no treatment for PSP Prof. Morris is superb at getting the medication right for managing symptoms. He will also refer across to bladder and bowel specialists if needed.

Yes, I was surprised how much battling is required to get good and appropriate services.

Wishing you the best.

Kevin

[AJK2001]

Have you tried the PALS team at Queens Sq? I have used them at a number of different hospitals for different types of issues and they have always helped find a resolution to a problem.

[Gardening51 in reply to AJK2001]

Thanks for the tip. I really hope it won't come to that, but I'm gearing up for a formal complaint.