Category Archives: Blog

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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‘The Other Side’ by Wendy Ashton

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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Personal Reflections from Hilary Wilson (Macmillan Family Support Worker and APCSW member)

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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Collaborative working within the Hospice ward – blog

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

EAPC Congress blog – Pam Firth. APCSW member and Joint Chair of the EAPC task force on Palliative Care Social Work

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.

Main points:

– 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

Dilemmas in arranging Public Health Funerals – blog

World Social Work Day and Boot Out Austerity

Written by Kevin Chesters, Douglas Macmillan Hospice, Midlands Representative, APCSW

I first came across the celebration of World Social Work Day (WSWD) last year but hadn’t done anything to mark the event then. This year though at a local authority third sector consultation event I ran into a friend and colleague Bridgett Bennett who I used to work with. She was organising an event to celebrate the day and asked if I would like to be involved. I said I yes and that I would host a stand at the event to showcase palliative care social work and the work the social work team at our hospice does. I also agreed to get in touch with the social workers in our local children’s hospice to get the perspective of palliative care social work with adults and children. I thought that as well as celebrating the event and catching up with some old social work friends it would be another good opportunity to keep on track with our aims I spoke about in my first APCSW blog which was to keep helpful relations with social work colleagues in statutory services.

The day totally surpassed my expectations. There was really good representation from across the whole spectrum of social work practice in the local authority. One stand included information about the worldwide perspective of social work practice. This was presented in a really interesting way and there was a quiz about the differences and things influencing social workers practice in other countries that to be honest had me scratching my head and asking for the answers, all good fun though. The event opened up to the community in the afternoon and members of the public came into view the stands and talk to social workers and other people working in the health and social care sector. The theme of the importance of valuing community and environmental sensitivity were woven throughout. This was really highlighted by a performance group called Masque whose performers have learning disabilities. They delivered a performance of dance and song which spoke about the importance of communities being inclusive and accepting of each other.

When thinking about the stand to showcase palliative care social work I was…

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WSWD and Boot It Out Blog – Kevin Chesters

Special Days

Written by Wendy Ashton, Eden Valley Hospice

Every day special memories are created at the hospice. From providing people with time to spend with family and friends to helping children access Jigsaw for support and fun, each special memory will stay with the family forever.

As Palliative care social workers here we co ordinate and organise these with the team. Here are some memories we have helped to create at Eden Valley Hospice and Jigsaw.

Parties and Occasions

We recognise that a stay at the hospice may mean patients and their families miss out on special occasions such as birthdays, Christmas etc. Here at Eden Valley Hospice we try to help the patients and the families and friends still celebrate.

In November we held a small firework display in the grounds and a family party with gingerbread and sparkles. All the rooms on the in-patient unit look out onto the garden and chairs or beds were pushed to the doors so everyone could enjoy the firework display.

At Christmas patients find it difficult to go shopping for presents. The hospice is very lucky to have a fantastic community and gifts are donated throughout the festive season. We were able to hand out some adorable cuddly bears along with selection boxes to patients and their families.

One patient told me it was nice to give the grandchildren a gift from him and not one his children had to buy for him to give.

Another patient said her child sought comfort from cuddling up the bear in bed with her.

Special Visitors

We love to welcome all visitors to the hospice, and also make someone’s special day by a visit.

I link with the Marketing and fundraising team a lot as they have links and contacts for all sorts of events and themes.Every day special memories are created at the hospice. From providing people with time to spend with family and friends to helping children access Jigsaw for support and fun, each special memory will stay with the family forever.

As Palliative care social workers here we co ordinate and organise these with the team. Here are some memories we have helped to create at Eden Valley Hospice and Jigsaw.

Parties and Occasions

We recognise that a stay at the hospice may mean patients and their families miss out on special occasions such as ….

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Special Days Blog – Wendy Ashton

Pat’s perspective on Palliative Care – “You’re allowed to just be the person you are”

Written by Sally Mercer,  St Christopher’s Hospice

As an English Literature student back in the 90’s, I was used to reading about the lives of people at various stages throughout their lives. I didn’t realise then that nearly 20 years later, as a Palliative Care Social Worker, narrative would continue to be central to my practice. My daily work continues to be dedicated to listening to the personal stories of people, and those important to them, at the end of life.

However, much of my work is done in isolation – I work in a community team where I am regularly visiting people in their own homes. Sometimes I meet with the person individually, or with them and those important to them, but the stories and their experiences usually don’t go any further than a discussion with colleagues in a meeting, or at their desk. People’s experience of palliative care is often not discussed, captured or shared outside of the palliative care world – which denies us the ability to develop a collective understanding – in both social work and society as a whole – about what people and their families value at this most important of life stages.

With this in mind, I approached Pat – a man in his 70’s who I have been visiting at home for the last 18 months. My visits with Pat have been in turn frustrating, funny, sad, and emotional. I have supported Pat and his wife in making the heart-breaking decision for her to move into a nursing home, and have worked alongside Pat to manage the ongoing mental and emotional impact of his deteriorating health. Pat had always said that he wanted his experience to be used to help others, and with this in mind we agreed that I’d interview him, and write this article to highlight his experience of palliative care.

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Pat’s Perspective on Palliative Care Blog

Social care champions: Engaging with social work colleagues in statutory services and working in collaboration in the end of life and palliative aspects of their role

Written by Kevin Chesters, Social Work Team Manager, Douglas Macmillan Hospice

Following participation in the Social Care Champions Workshop held at Loros Hospice in 2014, the social work team at the Douglas Macmillan Hospice started to look at producing an action plan to try and achieve some of the specific goals from the Framework for Social Care at End of Life. This work mainly focused on improving collaborative working with colleagues in adult social care services and linking them into training and education to help improve their knowledge, skills and abilities in supporting people at the end of life.

Progress was slow at first and initial attempts to identify and engage with the leads for education and training for social workers weren’t productive. We feared that our efforts were beginning to reflect some of the concerns raised at the workshops that there was low motivation and disillusionment amongst the social care workforce and no willingness on the part of social work management to fund training for social workers. We persisted though and in 2016 palliative care social worker Jackie Rutter was able to arrange a meeting with the training and development lead for a local partnership NHS trust. The aim of the meeting was to explore and identify a realistic plan to forge stronger links between them and the hospice. A proposal was put forward to facilitate a three day teaching programme to be delivered by lecturing staff within the education department and social workers at the hospice for social care colleagues who showed an interest in end of life and palliative care.

Course aims were for the participants to have a greater understanding of palliative and end of life care, including holistic assessment and communication skills for end of life, the role of social work in end of life and palliative care and for them to be able to relate these to their own areas of professional practice.

The pilot teaching programme was….TO READ MORE CLICK BELOW

Social Care Champions blog – Kevin Chesters

Wherever you go, there you are

Jon Kabat-Zinn said the following in “Wherever you go, There you are”:

“If what happens now does influence what happens next, then doesn’t it make sense to look around a bit from time to time so that you are more in touch with what is happening now, so that you can take your inner and outer bearings and perceive with clarity the path that you are actually on and the direction in which you are going?

If you do so, maybe you will be in a better position to chart a course for yourself that is truer to your inner being- a soul path, a path with heart, your path with a capital P. If not, the sheer momentum of your unconsciousness in this moment just colours the next moment. The days, months, years quickly go by  unnoticed, unused, unappreciated.

No one else can do this job of waking up for us, although our families and friends do sometimes try desperately to get through to us, to help us see more clearly or break out of our own blindness. But waking up is ultimately something that each one of us can do only for ourselves. When it comes down to it, wherever you go, there you are. It’s your life that is unfolding”.

I have used these words at our Multi-Disciplinary Meeting on Tuesdays at the Hospice and have found that when not only applied to myself and my own life but also encouraged patients to apply it to there’s that, there has been a change in their perception of things and themselves, and the situation which they face and, all of us will one day journey upon.

I have shared these words at the Hospice Multi-Disciplinary Meeting on Tuesdays and also with patients.  I have found that they encourage people, including myself, to reconsider how they perceive themselves and the situation which they face.

It is at these times that I have been encouraged to stay within the role as a social worker in Specialist Palliative Care as it encapsulates for me the very purpose in which I came into the profession in the first place.

To effect change and development in a person’s dilemma and reality through encouragement of their strengths and being is a very wonderful gift.

We all face very difficult and awful situations but the wonder of life is that these can be overcome.  Even when facing the final journey there are still obstacles and hurdles which need to be overcome and as a SW I feel very privileged to be asked to accompany a patient on such a journey.

James Neil
Social Worker
St Margaret of Scotland Hospice