A trundle from Scotland to Leicester……

So after a wonderful 24hrs in the beautiful surroundings of Stirling University, I headed back south to the midlands and Leicester.It was a verrrrry long journey, but a bit of humour kept me going as me and another woman appeared to be stalking one another from Newcastle 😳……we sat together amiably from Newcastle, both got off at Sheffield…….and ended up in seats next to one another on the train from Sheffield😳😳……..we then both got off at Leicester 😳😳😳😳….very funny…….

I got a taxi to the hotel only to meet Joanne, the person who I’d been emailing just leaving to go and pick someone up who’d been dropped off at the venue instead of hotel…..so she was able to show me the way to reception as my brain was running on sludge…….I got snug in my room and settled straight down.

I got up to another sunny day ready for the Dying Matters Conference….

I met Jo and Celia in the breakfast room and once finished we headed for the venue, a short drive away. It was a lovely open space all ready and waiting for the delegates

I had my own table for my books and people came along happily to chat before the conference started……

Once everyone had had a catch up and a cuppa we were ready to start.

Julia Grant, kicked off the day with hellos and introductions and the room was full. The event was a sell out. The theme this year in Dying Matters week is ‘Are we ready?

Julia asked everyone to stand, then asked how many had an up to date will – many sat down…😳…how many had discussed their funeral with families? Many more sat down.😳 How many had written their Lasting Power of Attorneys?……only me and Celia remained standing….🙌. Very surprising considering the audience! And wonderful since I mention that in my talk.
So clearly, since the theme is “are we ready?’, most are probably not.

Professor Celia Kitzinger from Cardif University was the first speaker on Advanced Decisions in Law and Practice and was introduced by the chair for the morning Claire Henry MBE.

Celia is the co-founder of the charity ADA, Advanced Decisions Assistance. She spoke of her sisters story who was in a serious car accident. Why best interests fail because clinicians focus exclusively on clinical aspect – clinical need and not necessarily in the interests of the family. Clinicians often use their interpretation of ‘dignity’ rather than referring to the individual.

LPA’s have a downside in that those assigned have to make decisions in the best interests of the patients, are always listened to. because if clinicians don’t think they’re acting in the best interests they can be ignored…😳…so shocking, such a surprise. I thought I was in the safe hands of my daughters, not clinicians. So Advanced Decisions must be made so you have belt and braces approach and are legally binding.

RESPECT forms and Care plans are seen as the persons way of stating their will. But it’s more helpful to have a legally binding Advanced Decision – it’s equivalent to as if the person had capacity. Too much medicine and ‘over treatment’ is not beneficial or wanted by many people but Doctors are often scared of being sued for not doing everything, that they do too much.

OH MY GOODNESS….what an amazingly informative hour……wonderful.

Next up was me. I spoke of the importance of language, body language and how we look to professionals to help start conversations, including:

If professionals are afraid or reluctant to bring up the subject of end of life or advanced care planning think how the people themselves must feel.”

During break people came and chatted and bought my book. So many kind comments and words.😍 I realised what a wonderful mix of professions were in the audience, from Consultant to GP, Nurses to social workers and home care staff to speech therapists and many other professions too. What a great mix!

After break we had Dr Zoe Fritz, from the ReSPECT team,talking about the introduction of the ReSPECT form. She spoke of how some hospitals vary in how they highlight DNR on people hospitals notes. Some have stars, some have a heart, some even put a teddy by the persons bed 😳 It is not legally binding. 🙄

Dr Zoe again said, ‘If you don’t ask the patient, you won’t know their wishes’

Her viewpoint was from the the healthcare professionals talking to the patient about completing the ReSPECT form. She gave 3 case studies and then what was written on the form

72 Trusts have adopted the ReSPECT form, 58 in the process …..another learning for today, as I thought it was just known everywhere……

We finished with a panel discussion which comprised the mornings speakers, including myself. The questions were interesting but I wasn’t typing 🙄 but I remember saying how I was glad I had my daughter with me when I went to my Gp to complete my ReSPECT form as the jargon and language can be a minefield for many. I also asked, why is it sooooo complicated with sooo many different forms?

As everyone went to lunch I sat quietly typing as my head and body was really ready for home, I picked up some really useful leaflets before I left as well………My taxi came at 1.30 and so that was it until Sunday…….as for me, Sunday is the start of Dementia Action Week and it won’t end until the following Friday😳 so a mega busy suduko week..😊

The view of the Humber was a welcome site after a long with wonderful 3 days…..

About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. 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.

4 thoughts on “A trundle from Scotland to Leicester……

  1. Hi Wendy. Have just completed your book. Thank you for your words of wisdom. I was diagnosed with dementia 18 months ago at 58. I also have people saying I don’t seem any different. But in my mind I have to push demons back into the corner of my mind to enable me to complete tasks. There was a point I doubted Drs diagnosis it took me 6 months for me to decide this was not going to determine who I am. I have joined yoga class which has helped me in many ways. Reading your book has inspired me to try other things. Thank you for that.

    Liked by 1 person

  2. So much to comment on here. The conversation difficulty is almost enhance if the patient has thought about it and comes out with credible thought -through points, such that the medics may feel upstaged.

    In Gloucestershire we are about to get ReSECT in August but yes the plethora of forms and the differences they contain make it difficult all round. Do we need more consistency to just to be believed!

    I’ll try to get hold of Prof K, to speak to my group on ADRTs, It great that thought your focus is necessary dementia, it encompasses so much els and draws many varied profesionals to speak and to LISTEN!


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