Why Johns campaign is so important…..

I’m re blogging this which I wrote after my mishap before christmas, simply because I was surprised by how many people hadn’t heard of Johns campaign and because lots of people had switched off social media for Christmas. the more I think about it, the more I know it should be used and advertised as being in use, in every healthcare establishment. so apologies to those who have already seen it – I just thought it deserved another outing, especially at the uncertain time we’re living in now……

Following my recent mishap and venture into the current NHS, I’ve been thinking so much of others that just aren’t in as fortunate a position as me…..

I have a voice that’s able to challenge, a daughter who knows the system…..what about those who may have agreed and resigned themselves to the fact that the ‘consultant knows best’….from what the second doctor said, if they hadn’t operated, arthritis would have set into that wrist very quickly and although I wont regain the movement I had, it will be a lot better than if they’d done nothing as the first suggested. 

Also its so important for Johns Campaign to be followed in every healthcare setting and for someone to be allowed to be with the person with dementia. 

Something so simple. Yes, I know Covid has put extreme pressure on the NHS but not allowing someone else to be there would lead to even more pressure – as we don’t feel comfortable, we then turn into ‘challenging patients’ and we give the wrong answers to some important questions.

Sarah has mentioned loads of things to me that I have no recollection of, like making sure I keep my shoulder and elbow moving as well as my fingers otherwise they’ll seize up. If id have been alone, how much would have gone by and the words left floating in the hospital room instead of in my head?

I’m lucky, ive developed ways to remember what’s being said, but even I missed so much. Someone left alone, as Dory was from the 4 amigos, would be in a different position since her daughter wasn’t allowed in with her. Dory would have still had a bad experience but her daughter would have been there to support and comfort her.

For some unknown reason, I’d forget, each time when asked, that I had an allergy to aspirin and Sarah was there to correct me. They asked me and if alone, I would simply have said no and they’d continue with their questions , instead of Sarah correcting me each time and them giving me a red wrist band to highlight they had to be careful – that could be so dangerous……

Sooo many hospitals report themselves as being dementia friendly

But sooo many now are refusing admission to supporters even at the entrance, as was the case with Dory. Even mine said ‘only patients allowed’, but as soon as we mentioned Johns Campaign Sarah was allowed to be with me. But how many others would not have known to challenge, not had the knowledge, the confidence to challenge someone they see as ‘being in authority’

I was much happier, much calmer and much more content in the knowledge that Sarah was there. 

I’ve said it so many times, I’m very lucky to be in the position I am; to be resourceful, to challenge, to have confidence and to have the comforting thought that my daughters will always do the same. 

Just how many others are not as lucky as me and who suffer the consequences …😢

you can find out more if you click the lick below…


About wendy7713

On the 31st July 2014 I was diagnosed with Young Onset Dementia. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

13 thoughts on “Why Johns campaign is so important…..

  1. Great post, Wendy, you are so right.

    And congratulations on your interview this morning on the BBC Radio 4 programme “Today”! You did so well. But be ready for other journalists to contact you now as your book publication approaches; it would be good to tell them about John’s Campaign too.

    Liked by 1 person

    1. Wendy, yes I heard you on Radio 4 this morning too. Really good. I hope I might be able to share the recording with other members of my social work team.

      Liked by 1 person

  2. Thanks for this Wendy. Having no family supporters or available friends in my area, this is a an area of great vulnerability to me and when attending hospital for any reason I am always alone and unsupported. As such, I fully recognise the value of this campaign for others. It is not recognised in my area, also, neither is the Butterfly Scheme used or staff aware of it. I will spread the word as far as I am able.
    Take care sweetie xx

    Liked by 1 person

  3. So important Wendy. I’d never heard of it till you featured it on your blog.

    By the way, I got into my car this morning and the radio was on. I thought “I know that voice” and it was you, Wendy, being interviewed about your new book! I only heard the end but very good! 👍

    Liked by 1 person

  4. I also happened to catch your interview on Radio 4 this morning, and you were very clear, as always! So thank you for doing that.

    This John’s Campaign also needs wider coverage. I feel that Covid has been used to stop good practice in so many areas. As Pam A said more organisations, both medical and others, need to be aware of the importance of advocating for those who may have problems in these areas.

    Liked by 1 person

  5. This is so important, and I’m glad you brought it up agsin. I wonder if we have anything like this in the US. It would also benefit non-dementia folks like me who have what is called “white coat syndrome”, meaning that in a medical setting extreme anxiety prevents understanding and retaining information. Keep up the good work!

    Liked by 1 person

  6. I am struggling to get even our GP to allow me to accompany my 83 year old slightly deaf husband to important appointments. I’ve offered to take a lateral flow, tried to explain gently , without upsetting my husband that he can get a bit confused, is wary of medics and doesn’t follow a lot of medical terms but no go. Last summer they called him in (alone) and without warning of approach told him they thought he had pancreatic or colon cancer (fortunately not seemingly the case after multiple tests when he was again all alone) Where has any compassion or sense of proportion gone? I’ll cite Johns Campaign to them this time as we’ve been called in again on an urgent basis, but am not confident it’ll make any difference.

    Liked by 1 person

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