One of our aims is to promote the lively exchange of news, views and experiences amongst our members.
Below are a selection of blogs written by our members along with some of the latest postings from others across the palliative care and wider social work field.
If you’d like to submit a blog post then please send it through to firstname.lastname@example.org
The Other Side
Written by Wendy Ashton – Hospice Social Worker, Eden Valley Hospice & Jigsaw, Cumbria’s Children’s Hospice – Carlisle – September 2018
In September 2018 I suddenly found myself on ‘the other side’ of palliative care.
My sister called to let me know that the ‘gallstones’/’kidney stones’ was actually bowel cancer with liver and lung mets. She also appeared to develop Tourette’s syndrome during our conversation. “It’s not curative” she informed me. But with my experience of working in palliative care for over eight years I sort of knew that already.
It was hard trying to listen to her explain the treatment options without saying to her ‘but it’s just a matter of time, sis’. My head went into overdrive. The mets were causing the pain, not the bowel cancer. Was she constipated? Had she thought about quality of life? She was always the ‘pathetic one’ who couldn’t watch Casualty with me or stand to have injections. She could never have worked in the health sector like me. For goodness sake she’d only got her ears pierced the once because it hurt.
My heart was in my boots and tears were flowing down my cheeks, but you can’t see down phones can you? I stayed calm and agreed with her that life is cruel and hers will be probably shorter than mine. But hey – any of us could be run over by a bus or drop down dead at any time. Oddly that scenario didn’t help.
The plan following her oncology appt was to have some chemotherapy at the Hospital that had diagnosed the cancer. She could have gone to a Cancer Care Specialist Centre in the neighbouring city as that was actually her catchment hospital. I talked to her – probably as a professional – about how this is a great unit and they do all sorts of wonderful stuff. As a sister I thought, “you have to go for the best because I don’t want you to die just yet”. However, her trust was in the diagnosing unit so I respected this and shut up.
I tried really hard over the next few months to be her sister and not let my knowledge and experience intervene. It is so, so hard……
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Personal reflections from Hilary Wilson on her 14 years in palliative care as she enters retirement
Written by Hilary Wilson – Macmillan Family Support Worker and APCSW member – September 2018
In June 2002 I was persuaded by some Palliative Care Nurses with whom I worked in my role as the Social Worker for the cancer ward at Ipswich Hospital, to apply for the position of the newly created role of Family Support Worker for their team. I wasn’t looking for a change of job, or even full time work, but the job description appealed. It felt like it had been written for me, making use of all my life and work experiences, and all the parts of those that I loved the most!
I was fortunate, I got the job! And then I had to set up the service. A new job, a mandate to work with the Palliative Care teams in the hospital and the community and to support families in whatever way was needed who were known to those teams.
14 years later I am retiring, but what a time I have had! Working in the NHS and in front line cancer services has been challenging. Setting up a service that didn’t duplicate other services already out there and that looked at the needs of the family as a whole felt like going back into the Social Work that I was trained to do in the 1970’s. Being a one man band also had its challenges, but also its benefits. Finding that actually it was often the children and young people who were the ones who needed support most fitted my love of working with that particular group. Working with many highly skilled practitioners from all sorts of different backgrounds, and then being able to develop good working relationships with schools. Setting up training for staff here at the hospital and also in schools. Being available for patients and families at the point of diagnosis and sometimes supporting them throughout their cancer journey, regardless of outcome. Supporting families in their grief, and helping schools to provide the best support too. Learning just what an impact cancer can have and the difficulties and stress of having to live with it, sometimes for many years, but without cure. The privilege of sharing some of the most difficult times of people’s lives not because I wanted too, but because they wanted or needed something that they felt I could offer.
I discovered the APCSW soon after starting the job and joined up. Whilst not the most regular attender at regional meetings – being a lone worker with no admin back-up had real challenges when it came to being out of the office for the day, to say nothing of annual leave – I loved all that is has provided. There are 2 particular highlights….
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Collaborative working within the Hospice ward
Written by Wendy Ashton – Hospice Social Worker, Eden Valley Hospice & Jigsaw, Cumbria’s Children’s Hospice – Carlisle – November 2017
Hospice ward staff, social worker, chaplaincy team, Carlisle Carers, ‘Wish for a Wedding’, GP surgery staff, translator, hairdresser, friend and all who donated gifts for the wedding.
Working with different nationalities and cultures can be both interesting and rewarding. They can be also be very challenging and in this one case this was mainly due to language barriers.
A young Polish man presented at the Hospice for an end of life admission. He and his partner spoke very limited English. There are no Polish speaking staff at our Hospice.
The medics asked me to source a translator asap so they could admit the man and try to determine his holistic needs. I did this via the GP surgery and the receptionists were amazing. On every occasion thereafter, we had to book the translator via the surgery and the staff were accommodating, friendly and very understanding. They ensured they booked the same translator on every occasion.
The translator that visited was approachable and listened to the context of the conversation we needed her to translate. Although it meant the assessments and treatments were slow and a little laborious at times, we as staff were assured that we were following the client’s instructions and meeting his needs.
It would have been great to have the translator 24/7, however we managed by downloading a translator talking app on the I pad and having picture cue cards that the client could point to eg: tablets, tea, food, too hot etc. There was also one friend (Polish)that spoke fairly good English and she translated in between when she visited.
The client’s needs relating to my social work role were to look at marrying his partner and ensuring his body/ashes returned to Poland. I referred to Carlisle Carers for support for the partner in applying for a funeral grant and benefits.
Family (2 sisters and a nephew) visited for 3 days from Poland and they were joined by a second nephew who lives in Yorkshire who was able to translate over the weekend.
Following discussions with the family and the client’s partner using the independent translator; the client decided to….
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Blog from 15th World Congress of the EAPC, Madrid, Spain
Written by Pam Firth – APCSW member and Joint Chair of the EAPC task force on Palliative Care Social Work – May 2017
Nearly 3000 delegates from 60 countries gathered in Madrid, Spain, for the opening of the 15th World Congress of the European Association for Palliative Care (EAPC) on May 18.
The theme was: Progressing Palliative Care, and it reflects the growing recognition of the importance of palliative care in Europe and around the world.
The first EAPC congress I attended was in London and took place just after Princess Diana died. The day hospice I worked for bought one ticket/registration and we shared it between myself and the Macmillan team half a day each but. I was lucky enough to go for the whole of the first day. As we were in Westminster Hall many people took time out to visit the funeral flowers at Kensington Palace.
I remember being amazed that Frances Sheldon, the first UK social worker EAPC board member and joint organizer of the conference, got the audience of a 1000 people to introduce themselves to their neighbors. In those days, it was mainly social workers who trained interactively and to do this at the beginning was bold. Dame Cecily Saunders was there and surrounded by autograph hunters.
Since that congress, I have attended every biannual congress, for eight years as a board member of the EAPC and latterly representing a research team at Southampton University So, lots of lovely memories and this year it was great to catch up with colleagues and friends from all over the world.
David Oliviere followed Frances Sheldon as a board member and was on the board for four years. He and I arranged the first meeting for social workers at the conference in Geneva. It consisted of David myself Sean Hughes and a Dutch, Swedish and German Social Worker. We have come a long way since then. A task force was formed and Sean, David and I wrote a white paper which was published by the EAPC in 2013/4.
This year the task force made a successful bid to run a parallel session on palliative care social work. We were thrilled to ask three social workers from across Europe to present papers. The first paper presented by Carla Reigada from Portugal was looking at the Barriers and Opportunities to implement Social Work practices in Europe. Inger Benkel from Sweden spoke about her doctorate research on Parents Experience of When an Adult Child is Seriously Ill. Sally Paul was the last speaker to an audience of over 100 people. She presented a paper Developing Capacity in End of Life and Bereavement Care in Hospices and Schools. This was followed by a wide-ranging discussion.
The task force will be presenting the end results of the survey of the roles of palliative care social workers in Europe but Dr. Maria Wasner presented the interim findings.
I want to conclude with some general observations about the congress the number of delegates has increased in the last two years. There were many people from South America because of the links with Spain. There were less sessions focusing on practical nursing issues such as constipation and more about disenfranchised groups such as the homeless, LBGT issues and palliative care for people with a learning disability and migrants. I heard much more about social issues but sadly not many research papers from social workers. It was good to see posters from Marie Price Nicola Holdcroft and several from the team in Brasov Romania. I was pleased to meet the only French palliative care social worker who completed our survey.
The congress was friendly well organized and the venue was interesting particularly as part of it was a giant car supermarket. It was lovely to be in Madrid and to have a chance to visit some major pieces of art such Picasso’s Guernica.
I hope that other social workers will send in abstracts for the 16th World congress in Berlin in 2019 Always happy to help with the construction.
To download a pdf version of this blog please click link below
Dilemmas in arranging Public Health Funerals
Written by Wendy Ashton – Hospice Social Worker, Eden Valley Hospice, Carlisle – June 2017
This week I feel I have been challenged as a social worker and as an advocate. A client nearing end of life came into the Hospice and had no ‘known/contactable’ NOK. He did not have a will. He did not have a funeral paid for or a payment plan. He did not have enough money to pay for a funeral.
He also informed me that he was ‘scared of being buried alive’ and really wanted to be cremated.
– No NOK to take responsibility for funeral. Friend who was first point of contact could not pay for the funeral.
– It is ‘usual’ procedure to bury people on a Public Health funeral.
– No will to state ‘cremation’ preference.
– Bank holiday weekend was imminent.
After a lengthy chat with the client I spoke to the council and wrote a plan for the ward on who to contact if he were to die ‘out of hours’.
The client understood the rules re: burials but was still worried about it. He accepted this was going to happen and slowly deteriorated.
I felt that it was unfair that he should not get his dying wish because he does not have NOK to consent to a cremation.
We looked at him writing a will. But these need an executor to organise affairs and the funeral and he did not want his friend to do this.
We looked at his finances to see if we could scrape together enough to pay for a basic cremation but by this time he was too ill.
After another call to the crematorium and to the Public Health Funeral coordinator they came back to say that if he signed a witnessed letter to say he really wanted cremated they would follow his wishes. Hooray….a step forward. I popped down the ward but he was heavily sedated and end of life.
Sometimes the boat sails too early and you miss it. I was so fed up. However, the client has been on a bit of a rollercoaster so in the hope that he would be more responsive the next morning (Sat) I left the letter. It was then the start of my Bank Holiday weekend.
On my return 4 days later the client had died. He had been well enough to sign the letter though and it was witnessed by a Dr and staff on the ward. The correct procedures had been followed and he was at the right undertakers and the documents were on their way to the coordinator at the council.
Perseverance paid off.
To download a pdf version of this blog please click link below