A Poetry Reading evening with a difference: a very personal response

A Poetry Reading evening with a difference: a very personal response

On Thursday 15th October, The Dignity in Care campaign, The Department of Health and Cambridgeshire County Council presented an evening of poetry reading featuring John Killick and John Lyons. These contrasting poets represented the Cambridgeshire Poet in Residence and the voice of Trinidad respectively.

With wine and cheese in abundance, in the charming environment of Ely Library, the audience was enthralled with the very moving poems shaped by John Killick from the words of people suffering with dementia. As the wife of a dementia sufferer, the words meant much more to me than mere strings of phrases uttered by forgetful people. The poems were shaped in such a way that each contained hard-hitting messages, ones that have meanings for the all of us. I was reminded of my husband’s suffering when he realized his mind was going. The people who spoke to John Killick evoked much of the fear brought on by the confusion the disease creates. The victim who spoke of the difficulty of following the map of life, the one who talked about people who helped her/him and how some ‘are less than alive now’ and the person who spoke about his love of horses who ‘show him the way to go home’ caught the imagination and touched on feelings that we all share.

In a brighter, more rhythmical mode, John Lyons brought alive the senses and feelings engendered by his early life in Trinidad and his life in the UK. The audience learned about eccentric characters from his family and the little boy in him impressed us all.

Future events include:

‘You are the Words’ when John Killick will be reading his poetry again in the Central Library, Grand Arcade, Cambridge CB2 3QD on the 29th October 3-5 p.m. and on the same evening,  Samantha Harvey, author of “The Wilderness” ( a story of an Alzheimer’s Disease sufferer) will be reading from her book  6.30 – 8 pm. Refreshments will be served at 6.30 p.m. contact Lynda.martin@cambridgeshire.gov.uk 07796 336301

Books by the authors are available at Toppings bookstore in Ely including “An Elephant in the Room” and “Cook –up in a Trini Kitchen”. Cook-up in a Trini Kitchen” by John Lyons features recipes, poems, stories and pictures from Trinidad.

PERSONAL RESPONSE:

This was my first introduction to ‘Dignity in Care’ and I was very impressed with their ideals. Phil Hope MP, Minister for Care Services offers a worthy statement:

“Being treated with dignity and respect is the right of every human being. I want to make it the core principle of care.”

It is with some regret I have to report that as the wife of someone who is in care,’ respect’ by those in the care ‘business’ (rather than those in the home that are directly responsible ) is at present, sadly lacking.

In the early stages of my husband’s illness, I arranged for colleagues to cover my work load so that I could attend meetings. These meeting achieved very little and as I was under such considerable stress already, attending them was obviously not going to help.

 From the moment the ‘powers that be’ decided to move my husband from ward to ward, finally closing the ward he needed so that the administrators could move in, my husband has received little consideration. At the time when my husband was being moved, no one would speak to me about what was happening. I was told by one respondent that I was ‘not permitted’ to speak to those responsible for moving him. Since then my husband no longer has the right or dignity to be called patient, husband or father by them.  I cannot praise his current carers too much, but the administrative system that is supposed to support him, in my estimation, has failed. Communication has been so poor, that I have had to resort to asking for every communication to be in writing. In doing this, and in questioning the behaviour of those who have been making decisions, I as his representative, have been largely ignored and treated as ‘the enemy’ .  

A feeling of distrust has gradually been established e.g. I believe that one of the administrators for Cambridgeshire County Council was prosecuted for stealing money meant for care homes. As a consequence, I have not sent the money demanded in threatening letters. Although I have written and asked how I may begin the process of appeal – again, I have been ignored.  I have resorted to asking for a solicitor’s help. My solicitor tells me that my husband most likely meets the criteria for continuing care. My husband is certainly worse than the condition of Pamela Coughlan whose case in 1999 established her right to continuing care.  

As the ‘service’ has become more and more divorced from a ‘caring’ organization and has become more aloof and even threatening, I am left feeling vulnerable, intimidated and insecure. I know I am not alone in this.   

If the Minister for Care Services is serious about treating everyone in or to do with the care system with ‘dignity and respect’, he must change current priorities from those that are clearly based on financial gain to those that put people, patients and their needs first.

Rosemary Westwell who suspects she has recently been referred to as a ‘perpetrator’.

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