What 5 tips do you have for caring for someone with psp?

Just thought this may help newbies and also give us all some helpful advice....

So here's mine

1) get the GP to refer the patient to the local hospice ASAP they are NOT just there for end of life care and their support is second to none

2) do NOT take crap off anyone (i.e. All the so called professionals) they'll have you running round in circles if you let them

3) start the process for chc (continuing healthcare) refer to www.caretobediffernt for more advice or ask us!

4) ask the GP for a referral to the neuro team they include physios, speech therapists, dieticians and continence nurses/specialists

5) be patient with your patient! Life is now s**t for them and I mean total s**t but we must be their rocks, if we don't who else will?!!!

34 Replies

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  • I agree with your points.

    Taking no crap is a biggie. I sent everyone info from PSPA so they could try to comprehend the complexity and severity of the disease so couldn't fob me off anymore.

  • perhaps 6 Tell yourself at hourly intervals "It is not him/her it is the disease"

  • Absolutely loppylugs! X

  • Yeah brilliant spiral! My mum gives the Psp cards to everyone ! X

  • I agree with spiralsparkle. Contact PSP Association Helpline and they will give information and support. The Charity has volunteer groups across the U.K. , organised Family & Friends days where expert advice is given by specialists on the disease and how to cope with it. We employ 6 Specialist Care Advisers who can provide face to face support in your community. We currently fund some £1.3m of research into early diagnosis and ultimately a cure via the PSP Research Network based at UCL London and 22 other U.K. Cities .

    Simon

  • I was told last week by the OT, that G wouldn't be eligible for CHC. G can barely talk, can't stand/walk/wash etc, lists to the right when in a chair, get up for a few hours (with the help from me and carer) e.g. Up by 10 then back to bed from 2-5/6 in the afternoon. Chokes regularly, needs feeding (considering PEG feeding as swallow function nearly gone). Doubly incontinent etc etc. So how bad do things need to get for us before we are eligible?

  • In same boat as you but I asked for the assessment anyway , even when our OT said we would not be eligible The first hurdle via social worker gave us 3 xA. 4 X B points and she referred us to the next stage. Next assessment Nov 25 , not quite sure what to expect , not holding out too much hope in succeeding . X

  • Keep fighting gypsywoman and remember put everything down as worst case scenario! Don't give up the fight!! X

  • Can you let me know how you get on?

  • Good luck :)

  • I think the OT was talking crap

    Can you ask the GP or hospice to start the chc process?

    I'm sure G would qualify but it can be a fight but it's a fight worth having!! X

  • Thank you! I will ask hospice and GP next time we go in. Is there anywhere online that sets out the requirements/points for CHC?

  • Yes it's on the pspassociation website on one of their pages, not sure if it's on pages for professionals or not but I will look tonight and let you know. Will also let you know how I get on, I have been told to allow 3 hours for the assessment, I can tell you in 3 hours we shall have a few toilet mishaps they can witness and if we have a cuppa there will be a choking episode ! X

  • Thank you! Just worked though the CHC tool,and looks like G might qualify

  • Yes, nothing to lose....I was told that you can ask for a CHC assessment through doctor , hospice, hospital etc and it can't be refused. X

  • The PSP article on CHC has some worrying errors in it. I have talked to them and they plan to publish a fresh one.

    This is by far the best place to go for advice on CHC

    caretobedifferent.co.uk/

    Best

    Kevin

  • Hi

    Sticking my nose in - sorry - Mainly for the benefit of others.

    The PSP Assoc CHC article has a number of errors in it and I find its tone discouraging.

    Its as if the person writing it wants people to think that its sooo hard to get. It has nothing about rights, nothing about appeals and nothing about the regulations the CCG's are bound to follow.

    It also doesn't even advise people to get a copies of the forms and score it themselves. Something which even the National Framework implicitly advises.

    I have sent them a list of the errors and they are in the process of doing a completely fresh advice page on it.

    This is the best there is:

    caretobedifferent.co.uk

    Folk can also post questions and get answers from an expert.

    Best

    Kevin

  • Found it, go to pspassociation web site , on carers page for getting help......click Psp publications and there is CHC funding listed, this can be read online.x

  • Have a look at caretobediffernt

    Brilliant site and is run by a lady called Angela Sherman x

  • Thank you again

  • Your very welcome

    Keep us posted! If I can help further please let me know and I'll try x

  • If you go onto gov.uk site and hunt for CHC the whole lot is on there to read including the check list tool for assessment .x

  • I'm with Gypsy woman

    You have a right to an assessment. Without that no-one knows the eligibility. Remember also that a lot of staff really don't know the rules and assume lack of eligibility based on people they know who get it.

    Get the assessment. Its in two stages.

    This is the first:

    gov.uk/government/publicati...

    I'm happy to feed you information to steer you through - just ask.

    Waiving

    Kevin

  • Completely agree with your comments, but sometimes the patient is very hard.

  • Agreed but can you blame them?

  • Great tips Satt, thanks. Nanny857 xx

  • Aww your very welcome x

  • Great tips, and the last point is so true, I think we carers sometimes forget what it must be like for them, I know I do.

    Thanks for the reminder

    Love Kate xxx

  • Your very welcome Kate x

  • 1. Get organised, get a grip, get a routine. 2. Get help, hands-on help, as much as you can from the NHS or out of your own pocket (if you have it), now is not the time to be cheap! 3. Take care of yourself, get away from time to time, out the house for 2 or 3 days, for sanity's sake. 4. At times of great stress, remember the sufferer didn't ask for this horrific illness. 5. Did I mention to get hands-on help, lots of it?

  • 1. learn sign language communication will become harder even if you have to make it up as you go as long as you know what they are saying they need or want, they also have type and speak machines that can be used voice will become softer and harder to understand it will make it so much easier if you do it now.

    2. Exersice warm water pool is amazing its the best thing I have found so far that makes my Aunt feel normal again.

    3. Get power of attorney for medical because if you dont have it life will be hell for you when it comes to have any say.

    4. Get a prescription for doc for anything you are going to need down the line Medicaid pays for just about anything that is needed, you will need , hospital bed, walker, tolit, showerchair, electric scooter, suction machine ect even if they dont need this stuff now they will get started sometimes it takes a little while

    5. Even though you want to pull your hair out take the time to lay in bed rub their hair, eat a popcicle, or just watch TV with them

  • Fabulous Kryste thank you!!!!! 💋

  • Great idea Satt!

    I'm going to cheat and add a couple to your superb list:

    1 Keep an eye on medication side effects and get the GP to review medication regularly otherwise there is a tendency for them to build up unnecessarily.

    2 Get Lasting Power of Attorneys Done, a Will and a Do Not Resuscitate if wanted.

    3 Look after yourself as much as possible, get sleep, and good events - Caring is very isolating and tiring - If you go down everything goes down.

  • Brilliant thank you Kevin ❤️

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