"You are with people at their most vulnerable time in their life and you are there listening to them,
and trying to make things that little bit easier for them"
Ali Dale and Lucy Pinner are palliative care social workers at St Helena and they support patients and families with the many different issues that arrive at the end of life.
Social work is for everybody. At a stressful and unfamiliar time for people, Ali and Lucy support with anything that’s worrying patients and their loved ones, including giving housing and financial advice. The varied role also sees them carrying out mental capacity assessments, leading on safeguarding issues, and advocating on behalf of the patient or carer.
Ali, whose caseload is predominately people staying at The Hospice, explains: “No day is ever the same and the role is incredibly varied, which is why it is so interesting. We can spend time with a person and run with it, rather than being restricted.
“One moment I could be giving emotional support to someone who wants to talk to me about their worries about death, their illness and their family. Another time it could be that their family is not getting on with each other, so it’s bringing the family together and mediating and listening to their stories to try to facilitate everybody’s wishes.”
During the 2018/2019 financial year, St Helena’s social workers received 268 referrals which resulted in 560 face to face visits and 821 telephone contacts.
Ali and Lucy work on a model of seeing a case for up to six sessions; that could be one session a week, or once a fortnight or monthly, depending on the level of need.
Lucy, who works with patients and their families out in the community, explains:
“Sometimes I meet people just once to check they are receiving everything they are financially entitled to, or they just want advice and then feel as a family they can make decisions and follow through themselves.
“Or I may be working with a parent who may be the patient but I’ll also be supporting their partner and their children. It could be around thinking ahead and advance care planning, or guardianship if there’s not another parent to look after the child when the patient dies.
“I may spend time supporting a parent to talk to their children, how to answer questions they may have about preparing for the end of life. This might include thinking about practical issues such as bank accounts being frozen and the impact this could have on the family. We’re trying to avoid a crisis for the family after that person has died.”
Ali and Lucy are part of the family support team at St Helena and work closely with their colleagues to support people holistically, referring on to other services such as counselling if necessary.
They support colleagues across St Helena with safeguarding concerns, and they make sure policies and procedures are in line with those of Essex County Council. They also support patients with complex social issues such as drug or alcohol dependency, and those who are homeless. Lucy continues:
“With someone with significant housing issues such as people who are homeless who may be sofa surfing, staying at different houses and moving around, there may be psychological distress. As a social worker I would be giving emotional support as well as trying to make progress with their housing need.”
It’s not only the patient who Ali and Lucy support in these circumstances; they support clinical staff so they are able to provide the care to that person. Ali explains:
“People who are homeless are not used to accessing services or trusting people. All of a sudden they have this palliative illness, plus all of the other issues they have been living with, then they come to The Hospice into an environment where there’s a bed, there’s a room and all these people; it’s not going to be natural for them, so behaviours are going to be different.
“We have to remember that people have lived their lives, and we can’t change how they are going to live their life, but we are about making sure that at the last part of their life they have the best quality, the best dignity at the end of life.”
Ali remembers spending time chatting with Julie* about her life after she was admitted to The Hospice. When there were talks about discharging her home, Julie revealed she wasn’t ready to go back there because she hadn’t been living there for a while and it might need a “bit of a clean”.
“Julie and I went to her flat so I could see what work was needed and when we arrived, I saw Julie was a hoarder. Her flat was floor to ceiling with all of her very precious belongings. Every single item meant something to Julie and it wasn’t rubbish, it was all of her life in her flat.
“It was evident that she wasn’t going to be able to get back there without some intervention. We contacted the fire service who came out and did an assessment on Julie’s flat. They put me in touch with a person-centred hoarding specialist, who managed to sort all of Julie’s flat without throwing anything away. With hoarding you can’t just go in and clear somebody’s house, it has to be done very slowly and with respect because it isn’t rubbish. There might be a random bit of paper but that will mean something to that person.”
The flat was sorted out ready for the equipment Julie would need to go home, but she deteriorated suddenly. Julie was desperate to see her flat so Ali, accompanied by a nurse, took Julie to visit her home.
“I felt she needed to go and see her flat because of the emotional pain; she had a lot of embarrassment about it,” continues Ali. “She needed to see it to have peace and seeing it was important for her to go on and have a good death because she knew things were in order.
“She couldn’t believe she had carpets again and kitchen counters clear of clutter. The hoarding specialist had really got Julie and her personality to a T and had put things out that he thought would be important to her. Because of Julie’s deterioration we never got her home to her flat and that was the last time she saw it.”
Ali worked closely with Julie [pictured together at The Hospice] to sort out other things that were emotionally important to Julie which were causing her distress, including updating her will and referring her to an organisation to help sort out issues with her benefits. Ali helped Julie to write down her funeral plans by talking about the music and the readings Julie wanted. Listening and understanding is key to the social work role.
A trust had been built up which was sealed when Julie agreed to let Ali wash her hair, which she usually would not allow anyone to touch. Ali explains:
“Her appearance was important to her because she was a model but the way her illness had an impact on her physical appearance gave her emotional distress because she hated the way she looked. We talked a lot about that. So it became our new thing where I would wash and plait Julie’s hair and she would talk a lot during those times.
“Julie died at The Hospice but she had a very peaceful death with who she wanted around her. She achieved so much. It was a really good piece of social work which incorporated all of the practical support and, importantly, the emotional support, building trust and advocating for her.
“She was able to access the palliative care that she should have without discrimination. She had dignity and she had peace. To see her smile when she saw her flat, I’ll never forget that. And then to see her face when I would do her hair; it was just about her thinking ‘somebody cares, somebody actually cares about what I’m saying and what I’m doing’ and was taking her seriously.”
Not every hospice has its own social workers and Ali and Lucy, who are members of the Association of Palliative Care and registered with Social Work England, are proud of the specialised work they do.
“It is really interesting and a privilege,” says Lucy. “It still amazes me that people let me into their houses, that they listen to me and disclose the most personal things at one of their most vulnerable times. And it’s a real privilege that people feel they can establish a rapport with me and accept support from me.
“You still do have to break down barriers perhaps due to past experiences, but I never shy away from saying I’m a social worker; I’m proud of being a social worker.”
Ali agrees her role at St Helena is something to be proud of:
“I just love working here; you get the opportunity to work in a holistic way. I treat people and families how I would want to be treated at the end of my life. It is such a privilege because you are with people at their most vulnerable time in their life and you are there listening to them, and trying to make things that little bit easier for them.
“Every day is different, every patient and family is different.”
*Julie gave her permission for her story to be shared to highlight the work we do at St Helena. With thanks to Julie’s next of kin.
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