Providing leading training for end of life care
We provide leading training in palliative care, to support other service providers.
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Doing it my way
Training to support providers
In 2013 we were approached by the NHS Clinical Commissioning Groups in Kirklees, West Yorkshire to produce a package of materials to support people with learning disabilities, their families and support staff to recognise and manage health issues and enable them to plan for changing health needs through to end of life care.
We set up a project team led by an area manager with personal experience of supporting people with learning disabilities both as a professional and as a family carer, specialist nurses who support people with learning disabilities who also have complex health needs, a specialist trainer and front-line support staff. This gave us a breadth of knowledge and experience to draw upon.
We consulted other professionals and had our work peer reviewed by the local Kirklees Hospice – Kirkwood and various other providers and specialist GP’s.
As a result of this work we now undertake “Doing It My Way” training
Our service is aimed at training external service providers in delivering the best palliative care to people they are supporting.
Our training is comprehensive and engaging, and provides a holistic view to end of live care, specifically for people with complex health needs.
Here is some of the feedback we have received in delivering the course:
“The training staff at XXX received was very informative and made into a very positive experience.” (NHS provider)
“Thank you so much, this training and information we gained from the training was invaluable to our service.” (August 2019)
““The pack is fab.” (AK -University Hospital Southampton NHS Foundation Trust)
Denise was born with learning disabilities and cerebral palsy. She was a much-loved sister with a close and supportive family. Denise moved out of her family home living in many different homes throughout her life.
Denise moved into 8, Oxfield Court on the 4th of November 2004, she was 46 years old. Denise had had major spinal surgery and had gone for rehabilitation post operatively, which had not been successful.
Denise had a contagious personality and fitted in straight away with the other five clients who lived there. Denise was always polite, courteous and strong willed and her manners never failed her.
Denise was a fountain of knowledge and liked a good gossip. When she finally went to bed, she always said, “good night sleep tight and don’t let the bed bugs bite.”
Family and friends were very important to Denise she had a heart of gold; She had more pleasure from giving gifts than receiving.
Religion played a large part of her life, Denise believed in god and heaven. She never hesitated to recite the lord prayer when receiving sad news about someone. She would tell staff her mum was in heaven.
How Denise’s health impacted on her life
Denise experienced many challenges with her health her major surgery, had left her with a spinal cord compression and high level nerve damage, but she remained independent. As her physical condition deteriorated and she became more dependent on staff. Denise found this very frustrating at first and the staff needed to support her to come to terms with her condition. The whole team had to adapt and ensure she still had control whilst being dependant. As time went on she became wheelchair dependant and lost all her upper body strength and dexterity.
Denise then started to have problems with her swallow, and her ability to eat safely. Denise went to see a specialist who recommended a PEG tube. The team fully supported her to make an informed decision. They took her to meet someone with a PEG so she could see what it involved. She agreed she needed a PEG and she went to hospital to have one fitted supported by t her family and carers.
The team liaised with Amanda McKie, the matron at the hospital to support Denise and make sure her needs were met in hospital. She did not have an easy time at first with the PEG, as there were complications. The team felt she was so brave, she never complained.
The care staff worked closely with the specialists to ensure Denise’s health needs was being met. More health problems developed, her seizures became more frequent, which started affecting her quality of life.
Family support and implementing “My Way”
Denise was involved in creating “My way” and the end of life support package the team developed. She was in the film with her sisters and she loved the stardom being centre of attention; she never struggled to find her words on filming day!
This process had been introduced at the planning stage in Denise’s care. Many emotional discussions had taken place between Denise, her sisters and the team. We were on Denise’s life journey together every step of the way, the focus being on enjoying life.
Denise started talking less and less, some days she could not converse with staff, but the team knew her non-verbal communication so well, n they knew what she wanted or needed just by her eyes.
Denise had difficulty with her secretions, which lead to a hospital admission with aspiration pneumonia and sepsis. Denise was very ill, and her family never left her side. The medical team were concerned even though she was having treatments they were concerned she would not pull through.
Her consultant, her carers, her family and Amanda McKie had a best interest meeting to talk about her condition. After a long discussion it was decided that Denise was end of life and she would want to be home wither family and the team who knew her the best.
From that day, her three sisters moved in to Denise home and never left her side. The team supported not only Denise at the end of life but her three dedicated sisters. They were kept informed of all discussions with all the specialist services and were involved in every decision that was made.
Denise died peacefully in her own bed three weeks later with her sister and brother in law at her side.
Denise touched so many people over the years her funeral was packed! Everyone said the lord prayer in memory of her. Her keyworker Vivian managed to stand and read her eulogy of her life, without tears just!
Denise will never be forgotten by any of her family or the team, her sayings, her sense of humour will be talked about for years, she certainly touched everyone lives.
Denise had helped develop “My Way” with the team, and in the end, it helped and supported her to have a good death.
Her legacy will live on to help other people with a learning disability have good end of life care and a good death for years to come.
Her eulogy ended with:
“Our sister, auntie, great auntie, boss and friend – good night, sleep tight and don’t let the bed bugs bite, may you rest in perfect peace!”
4 March 1959 – 4 June 2015
Finalist of the Great British Care Awards
Marnie Walker was a finalist for the Yorkshire and Humberside Great British Care Awards. She was nominated in recognition of her contribution to Doing it my way. Marnie has been a key member of the group since its beginnings and worked tirelessly both raising the profile of My Way within services and organising and presenting training workshops and presenting the project at the LD RCNi Practice Conference in Manchester. Marnie not only promotes she also implements the process with compassion and sensitive everyday making a real difference she supports and their families – Please see case studies.
The awards were attended by a range of service providers based in Yorkshire and Humber.