Share your feedback on our 'This is me' form

Discussion in 'Alzheimer's Society notices' started by HarrietD, Oct 10, 2018.

  1. HarrietD

    HarrietD Administrator
    Staff Member

    Apr 29, 2014
    4,251
    London
    Hi everyone,

    Have you used our 'This is me' form?

    Our Publishing team is currently reviewing their form for anyone receiving professional care who is living with dementia or is experiencing delirium or other communication difficulties.

    In order to improve the form, the team would love any feedback you may have. Specifically, they would like to ask:

    • In what setting(s) have you used ‘This is me’ (at home, in hospital, in a care home)?

    • Has ‘This is me’ helped to improve care that a person you support has received? If so, how?

    • Do you think anything on ‘This is me’ should be removed, added or changed?

    • Can you share an anonymised completed ‘This is me’ form with Alzheimer’s Society, so that we can see how it is being used?

    Any feedback would be really appreciated by our Publishing team. If you have any questions or would rather email your feedback, you can send it to talkingpoint@alzheimers.org.uk

    Thank you :)
     
  2. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    1,879
    Nottinghamshire
    Hi

    I've had a look at the form and filled one in when dad was in hospital recently (not sure they used it) but I was wondering if you have a downloadable version which can be filled in and then printed off?

    My handwriting is not good!!!
     
  3. HarrietD

    HarrietD Administrator
    Staff Member

    Apr 29, 2014
    4,251
    London
  4. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    3,609
    Kent
    When I stayed in hospital with Dad twice...I completed the form each time and I thought it comprehensive and it was placed by his bed where it could be easily seen. However the problem was no member of staff ever looked at it even when I pointed it out.
     
  5. Toony Oony

    Toony Oony Registered User

    Jun 21, 2016
    272
    I used the form when Mum moved into a CH as respite, which I had arranged to run seamlessly into full time care. It was placed in her file, but I don't think anybody looked at it .... until they asked me a question and I told them the information was on the document that I had given them the day Mum moved in. I think they transferred the bits that they particularly wanted from that to their own system. I was going to take a copy into hospital for Mum, but thankfully her stay was only a couple of days, so I don't think it would have made a huge difference. Any longer and I would have done so.
    I found the document very useful for putting useful and relevant info together, and it served as a good prompt for me regarding what info to include.
     
  6. Philbo

    Philbo Registered User

    Feb 28, 2017
    474
    Male
    Kent
    Hi

    I had not seen this form before (funny how you miss stuff) but I think it is very good. The only observation is that perhaps there could be more space for information in some or all of the sections?

    My wife recently had 9 days respite in our local Integrated Care Centre (NHS Mental Health Trust/LA run).

    The care staff in their respite wing also rotate in the day centre, which my wife attends one day a week, so they had some knowledge of her already. However, for the respite stay, I provided a couple of pages of "background notes", which they said they found very useful.

    The form does provide a good template, so I will definitely be using it in the future.

    Phil
     
  7. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    1,879
    Nottinghamshire
    Thanks @HarrietD. That's the form I found but I can't fill it in on the screen. It could be that my old iPad (iOS 9) is just too old to cope with it :rolleyes:
     
  8. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    66,875
    Kent
    I filled in the This is me form for my husband when he was in hospital. The admission nurse I handed it to seemed impressed. When I was discussing his condition with another nurse a few days later, she opened his file and was surprised to see This is me at the back of the file. I've no idea how many read it or had time to read it.

    I have given a couple of talks about dementia recently and members of the audience were very impressed with the This is me form and quite a few took copies for personal use.
     
  9. nitram

    nitram Registered User

    Apr 6, 2011
    16,292
    Male
    North Manchester
    For info.
    W10
    Chrome default install - can fill in on screen.
    Firefox default install - cannot fill in on screen.
    @HarrietD
     
  10. nitram

    nitram Registered User

    Apr 6, 2011
    16,292
    Male
    North Manchester
    @HarrietD

    With Firefox if you click on 'download' you get an option to open file with any third party software you have installed.
    2018-10-11_105216.png
     
  11. Beate

    Beate Registered User

    May 21, 2014
    10,558
    Female
    London
    I'm sorry but I don't like the first page at all. It used to be simple and uncluttered, now it's full of logos, background colours and instructions on what to do. This is what it used to look like, and it gave me the opportunity to paste a big photo of OH in the middle, because you are only leaving a space for a passport sized one on page 2. I think photos of what the person looks like and showing them laughing and engaged in favourite activities or surrounded by loved ones are vital to bring it home to any doctor or nurse that this is a person and not just a medical case. I attached several pages of printed out photographs to our form, and was once told by a doctor that it's one of the best This Is Me forms he had ever seen. So why not encourage this by attaching two more blank pages at the end "for your photos"?

    Btw, I'm happy to show you our completed form but I don't want to have to anonymise it and post it here so if you provide an email address I'll send it over (minus the extra photos).

    image.jpeg
     
  12. HarrietD

    HarrietD Administrator
    Staff Member

    Apr 29, 2014
    4,251
    London
    Thanks everyone for your feedback. This is incredibly useful, and I know the Publishing team will really appreciate your comments :)

    @nitram, thanks for figuring that out - it's good to know that the form can be filled in on Chrome but not on Firefox.

    Thanks @Beate, your comments are really helpful. Could you email your form to talkingpoint@alzheimers.org.uk? I'll then pass it onto the team.
     
  13. Beate

    Beate Registered User

    May 21, 2014
    10,558
    Female
    London
    Emailed. :)
     
  14. LynneMcV

    LynneMcV Volunteer Moderator

    May 9, 2012
    3,008
    south-east London
    I have used the This is me form twice - both times when my husband was admitted to a secure NHS facility.

    The first time was in 2016 and it was an absolute godsend. I saw real evidence that the form had been read and that staff were using the information provided to engage with my husband.

    The second time was earlier this year. Although in a much better unit which was dementia specific, I found that the information I provided on the form had not
    been read by many.

    Maybe it was because my husband's disease and symptoms were so much more progressed and his ability to talk had all but gone, but not everyone was as aware of his story as they could have been. There were also a lot of agency staff in and out during my husband's stay and maybe that meant they were not around long enough to think it worth getting to know individual patients.

    Indications that the form had not been read came through actions like drawing up a care plan to give him a bath twice per week (when I had said on the form that he hated baths but would take a shower); trying to get him to drink milk (the one and only thing he hated to drink); porridge for breakfast (he had always hated the stuff); approaching him from his right hand side (even before dementia he loathed people coming anywhere close to his right eye).

    It wasn't that the regular staff were uncaring. Some, but not all, had definitely looked at the completed form. Maybe it was because I visited every day that they preferred to ask me questions about my husband, his likes and dislikes etc, while I was there, rather than read the form.

    Having said that, although they might not of have read the form, they did at least listen to me. Once I had told them verbally all about my husband's background, likes and dislikes they definitely tried to do things based on that information.

    I was glad when they asked questions and spoke to me - but I did wonder why I had spent time filling in the form when everything I was being asked had already been covered in that. Maybe they would have used the form more had I not been a daily visitor.

    Basically the idea is very good, but it falls down if not everyone involved in the person's care reads it.
     
  15. HarrietD

    HarrietD Administrator
    Staff Member

    Apr 29, 2014
    4,251
    London
    Thanks so much @Beate for emailing the two forms to us, and @LynneMcV for sharing your experiences and thoughts about the form. It's very much appreciated, and I know it will be a great help :)
     

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