Got to tell you this......

[Heady]

Our hospital, Southmead in Bristol has just opened a new clinic for PSP. Great! I have had to get my doctor to refer S. Did nobody think to just take the patients from the data base they have set up???

Anyway, I have just had the referral come through and phoned up to get an appointment, they have this new wonderful scheme! Yes, they could give me a choice 8am or 8.30am 29th October. Said sorry, there was no way I could get S to the clinic at that time. I would have to be up at the latest 4.00am! The answer? Sorry, there are no other appointments until these have been taken. Phone back in about a week!!!! WHAT!!!!!!!!!!!!!

Please be honest, is it me? Have I lost the plot completely? That I don't think this is acceptable at any level!!!!!

I just laughed at the woman on the phone, our wonderful NHS, it only gets worse. As if I have loads of free time and the mental capacity to remember to do this. What happens next week, when they only have another stupid time, do I have to keep ringing for ever and a day to get to see this new consultant? One way of keeping the costs down, you never get an appointment, therefore no treatment, then you die and don't need it anyway! Everyone's a winner!!!

Lots of love

Heady

[Kevin_1]

Hi Heady

A PSP clinic? WOW.

When you do get a sensible appointment... 0100 in the morning or something do let us know what they offer.

Did you clean and reload that gun of yours? Sighs... time to get it out eh?

You probably know all of this, but its worth writing for folk who don't.

It should be a quick and simple one to resolve - but I bet you've resolved it already!

The NHS is legally obliged to offer choices in various areas.

gov.uk/government/publicati...

"Once you have decided on a hospital, you can book your first outpatient appointment through the NHS e-Referral Service. This service lets you choose a date and time for your appointment that is convenient for you."

(I am trying to write this with a straight face)

A quick telephone call and ask to speak to the bookings manager mention the Choices framework and ask for a sensible time. If you get anything other than a good response (regretfully) ask for the PALS telephone number. (Patient Advice and Liaison Service). They are the first line for dealing with issues to prevent complaints. All contacts with them are noted and the Hospital Inspectorate always goes through these records. It actually affects the hospitals scoring.

You should find that you get something more helpful without PALS. If you do resort to PALS my experience is that they are very approachable and helpful. They certainly carry a lot of clout.

Wishing you the best

Hugs

Kevin

[Heady in reply to Kevin_1]

Thanks Kevin, think I will try the PALS line, after I have been rejected with my next attempt to make an appointment!

Lots of love

Heady

[NannaB in reply to Kevin_1]

That's interesting Kevin, thanks for the info. Wished I'd known before.

X

[Satt2015]

What a joke heady!

They get your hopes up and then wham!

I'd do as Kevin says and demand a later appointment!

Why is nothing straightforward?!

😕

X

[Georgepa]

Surely you realise that organisations are not there to meet the needs of their clients ,their real aim is to self perpetuate and primarily to satisfy the self generated needs of the organisation.....or am I being cynical ?

[Kevin_1 in reply to Georgepa]

Not cynical enough

Reading this forum it is weird how many obstacles pop up and sometimes from the oddest of quarters!

[Heady in reply to Georgepa]

Nothing cynical George, just spot on!!!

Lots of love

Heady

[abirke]

there's that sarcasm again, Heady,,,Well they probably think " oh she'll be up changing sheets anyway, let's get her an 8:oo slot" And seriously what will this clinic do that hasn't already been done....do they have a new therapy that they can only bestow within clinic walls?

may I just interject this feeling on the whole clinic thing, OMG, ya'll have a clinic devoted to PSP? You're telling me that when you go in ? the doctors are gonna know what the heck youre talking aboout? and how to help with some of the symptoms and educate the carer and patient on what issues will develop and how to deal with them?B will have fellow patients he can meet and maybe not feel so freakin alol alone sitting day after frickin day all by himself wondering in his trapped mind what the f is going on with him why is he the only one with this frickin brain eater ......Crap, sign us up! We'll go at 8 am ...we'll take the freaking 15 hour plane ride just to have someone to slobber with...My poor baby...he got no clinic he got no one except me pushing him around like a sack of potaotes.......tears are flowing....it's been a rough day alread...

ok I'm back, sorry . Heady I hope you get it all worked out and that S can find something good in this new clinic

AVB

[Kevin_1 in reply to abirke]

Oh, AVB... Hugs

And remember you have a whole bunch of loving and combat trained carers on your side here.

I get worn to tears sometimes and next minute it smiles because of something good happening with Liz and then its battle lines to protect her and keep the services and pennies coming in.

PSP is a carer roller coaster too.

More hugs

Kevin

xx

[abirke in reply to Kevin_1]

thanks k1

Oh by the way, Electric razor! I forgot to mention that with regard to her leg shaving booboo. B was nicking more than shaving . This was some months after diagnosis and I noticed his hand eye coordniation diminishing,,,, you might try it...plus much faster!

AVB

[Kevin_1 in reply to abirke]

No, as you say... hand eye co-ordination... and as you have said elsewhere fine motor movements... Liz was cutting herself to ribbons with an electric shaver. Too much pressure.

I hope sh doesn't see this post... but she makes me navigate arounfd this site for her so she prob. will... (Hi Liz... oops)

Liz likes to spend time sorting her bod. out... always has... I think it is her way or caring for herself, respecting herself... I'm a man so I have to guess right?

Soon it will be that the carer will have to do it I guess.

Waiving

K

[Heady in reply to abirke]

You are right AVB, I don't hold out any hope at all for this clinic. It's meant to be multi discipline, I bet that means a physio and speech therapist may be there. Got those two covered! But, you are right, to walk into a clinic, where people aren't going to go WHAT.?? Would be great. Over here, we do go to a support group run by the PSPA, so do meet others, which helps enormously.

Hope your day is better today, mine was pretty ropey yesterday as well. Got overwhelmed by the lack of communication and frustation.

Lots of love

Heady

[abirke in reply to Heady]

Well so far I got the garbage to the curb before the men took it...so that's a plus...I walked passed my car where I noticed my windows were down whilst it rained last night so that's a minus...I'd say it's fairly balanced as of 10 am....It'll be a good day...hope it is for you....I'm glad PSPA has something like that ya'll can go to....Hey PSPA, how do I start a club on this side of the pond?

AVB

[Heady in reply to abirke]

Why not go to their website and ask!!! Or contact CurePSP, they are more over your side of the pond than PSPA.

Lots of love

Heady

[abirke in reply to Heady]

Yes I should...I tried to get on a thing with CurePSP but they only have metgs once a month and I could never get on their site which was in Little Rock (AR)

But youre right Heady I should create a thing...why not....hmmm

AVB

[Heady in reply to abirke]

Common on AVB, all that time on your hands, now you don't work! Where's you spirit of adventure???? I know, it got thrown out with the garbage.........

Lots of love

Heady

[ketchupman in reply to abirke]

I'm on the Patient and Caregiver Advocacy Committee at CurePSP and we had a committee meeting last night. I told them how awesome this site is and they are going to look into either creating their own or partnering with Healthinlocked. Told all of the committee members they really need to read some of these posts and follow them, as they can learn a lot about the needs of patients and careers. I know I sure have. Love to all.

Ketchupman

[abirke in reply to ketchupman]

Good job Km ! In your meetings now you say it's a committee . do you vote on things and such or is it like a support group? I'd like a face to face support group...something maybe Bruce could be involved in ...granted he'd just sit there...but other psprs could do the same...

AVB

[ketchupman in reply to abirke]

It's a committee, mostly people who have lost their spouses to PSP and also includes a VP from CurePSP. But our committee also helps form support groups and provides them with materials. We're working on creating a support group leader manual now. There are about 40 or so groups around the US. Some in-person and some via the phone or Internet. We're forming 3 up in the NY area. Kathryn Scott, who wrote the book about her husband with PSP (Last Dance at the Savoy) will be leading one in NY. I forget, where are you guys located?

[abirke in reply to ketchupman]

NW Arkansas...There's a thing in little rock actually I have looked back at their webinar notices and I don't know why I say Little Rock....I don't see it anywhere on the notice...I am signed up... have written several questions for the webinar got no response like here so I sort of dropped it. The facilitators were Bobby and Libby who I think have stopped being the facilitators...I'm not so sure I would want to go that route though maybe if I/ Bruce and I could hold support group once a month...that might be good. There's 250,000 in North west Arkansas if there is 6 in 100,000 people diagnosed that means 13 people up here could use this ! There's two people in my small church with parkinsons...hmmm I don't know I get all yah lets do this! and then wimp out...then I need a support group for wimps! hahaha

AVB

[ketchupman in reply to abirke]

We (CurePSP) just recently contacted every support group leader that was on our list, or at least we attempted to contact them. I was given about a dozen names to reach and probably only was able to locate 3/4 of them. And of those, probably a 1/4 are no longer leading groups. A lot of our support group leaders were caregivers of PSP patients and once they passed, they sometimes want to give up leading their group (unlike me), as they want to move on with their lives. I saw where Ileen just re-joined our group here. She actually leads the committee that I'm on and recruited me to join a couple of years ago. I'll try to pass the word on to her about your situation. If we can't find an nearby group, I'm sure they would love for you to help lead one. That's one reason why we're investing in the production of a really good manuel to help support group facilitators.

Tons of love,

Ketchupman

ps ... you're definitely no wimp.

[abirke in reply to ketchupman]

Hahaha...somedays more wimpy than others...but I suppose for the most part if you're a caregiver, you're not a wimp, eh.

Yes it would be good to continue or start a few more groups ...I doubt w'ell ever have too many. and I have an instant access to our house or our church, and maybe even our library...haven't really looked into how to schedule that... I also work closely with another church so they may open up to a monthly event etc....be nice if it were bi monthly.... well I'm getting ahead of myself...but I do want it made known I have a place for us to meet....Now what

AVB

[Debbieann]

A clinic just for PSP sounds brilliant, shame whoever organised the appointment system doesn't have a clue!! Typical NHS I'd say

Love Debbie xx

[easterncedar]

I wonder if anyone on this site knows anything about this clinic. Has anyone been yet?

Sorry to be negative, but what can it possibly offer? I am watching my guy slide, and just don't see any way back up. I have fought pretty hard, but his recent decline has been overwhelming. One thing about ketchupman's heroic fight: if he couldn't stop psp, with all he did, I can be sure that I can't win. I have decided the three-hour drive to the specialist in Boston is no longer worthwhile. So what, dearest Heady, are you hoping to gain that is worth this aggravation? Love and peace, a resigned ec

[Heady in reply to easterncedar]

I don't know EC. Just feel if it's a new clinic, I ought to support it, never know, if some years down the line, they may find something useful. "One day!!!!!!!!!!!!!!!" Some one will, so we have to take part in these things, could S drop a little seed in a doctor's brain, that leads the way?

At least I will feel as if I am trying to do something, even if I do end up with numerous black eyes, from the door keep slamming in my face!!!

Lots of love

Heady

[easterncedar in reply to Heady]

Wise and selfless, as usual, Heady! You are a warrior. Much respect, ec

[Heady in reply to easterncedar]

Selfless ME.?????? Certainly not feeling it at the moment. Have done something to my knee and in a lot of pain. So definitely not impressed with this caring lark. Is S caring or being considerate? No, has decided he is perfectly capable of getting up from his chair and going wherever. Needless to say, lots of floor hugging going on. I know he is a male, but they just drive you insane, how can someone expect to walk to somewhere, when they are wheelchair bound????? Next time he is staying wherever he lands!!!

Lots of love

Heady

[NannaB]

Why am I not surprised at this? When I read the first part of your post I said whey hey, brilliant. Then I read the appointment time. I had similar. My husband was given an appointment at 8.30 am at a hospital that would take 45+ minutes to get to in the morning. We live less than 5 minutes by car away from our local hospital. I had the same discussion, have to get up at the crack of dawn, why can't we go to the local hospital; because they look at both lists and pick the next available appointment and that was the next available appointment. I asked if they look at where people live and the answer was, no. I did ring again later and managed to get the local one. Whoever makes these stupid rules has no common sense and have never been in our situation.

I wonder how many missed appointments there will be in this wonderful new clinic when folk can't get there in time.

I hope you do manage a suitable time as I'm sure we will all be interested in knowing what they do in this new clinic.

Sending you a big hug Heady.

X

[Wishdoctor]

Man, at first this sounded great! A clinic devoted to PSP. Then I saw the appt times offered and my next thought was - how is this clinic devoted to PSP but doesn't know it shouldn't even offer appts earlier than like 12, to account for wake up time, dressing time, travel time, etc. Makes you less than optimistic about how much more they know about PSP than the next guy.

Anyway, the PSP support group sounds great at least. Trying to find something similar for my parents. Also trying to find a carers support group. Anyone know good places to look for that?

Thinking of all of you. I hope everyone can find a reason to dance today, even if it's in the rain

S

[Heady in reply to Wishdoctor]

If you are in the UK, get in touch with the PSPA, they will tell you where the nearest group is?

Lots of love

Heady