In this feature, Charlotte tells us how, in her role as social worker, she is often the bridge between the families using our hospice services and the many professional agencies supporting them, such as health and education authorities and social care providers.
I am there for families, helping them to connect with the appropriate professionals – helping them to build those relationships, and giving them the confidence to make those relationships sustainable. In my experience, one of the biggest frustrations for the families we care for, is waiting for a situation to be resolved and feeling that nothing is happening. This could involve any of the numerous agencies they interact and work with.
When people are so tired, overwhelmed, fed up, or have got difficult relationships with professional agencies, I can be the person who can support them, be persistent and give the family a bit of a break from paperwork and phone calls. A family with a disabled child just doesn’t have the time to be on hold for an hour, I can do that for them.
My role can cover a whole range of practical support for families, as well as being a listening ear, and being someone who has insight into the challenges they face emotionally and practically. My aim is to make sure the right services are involved to try and move a situation forward. This can include making referrals such as to occupational therapy, social care and charitable organisations, making benefit and grant applications, as well as helping families make complaints when things are not going well and they are not being responded to in the way in which they should.
One particular family were living in a housing association property which had a number of issues. The house was in a poor state of repair, and there were some specific needs to make it suitable for their child. I helped them follow the normal process of getting in touch with the appropriate agency, but they felt they weren’t being listened to, so when the situation wasn’t resolved, we wrote to the local MP. Once the MP became involved, the situation was resolved and their home got the modifications required to support their child.
It was quite a protracted process and the family were really proactive, but the time and head space they needed to keep on going was exhausting. They would take time out of their day to write and send emails, or ring people they thought should solve the problem, but when nothing happened it was very frustrating for them.
My role in this situation was to do some of the leg work; find out who the senior housing officer was, find out who their MP was, collate the information needed and help draft an email. From experience, I know that complaints are more effective when they are lacking emotion and set out very clearly what the concerns are and what the impact might be.
I helped translate how this particular family were feeling about their situation, into an email that clearly communicated the problems and highlighted the outcome the family needed. It is difficult for parents to do this sometimes because they are fed up and exhausted and simply don’t have the time. This is one way I can help them. It is a small thing but it can make a big difference.
I helped a family get an Education and Health Care Plan (EHCP) for their child. An EHCP is a legal document that sets out how a child and young adult’s educational needs will be met. The process hadn’t been progressing well and it was drifting along.
Many parents and carers are caring for a disabled child in challenging circumstances whether this be because of poverty, social isolation or things like their own experience of childhood, challenges with adult relationships and multiple caring responsibilities. I understood something of the parent’s background and what they would find difficult, so I went along to meetings and could arrange a break before we got to the situation where it became too much.
Over the course of a year I have worked with the family on different aspects of their lives and we have made good progress. In each situation, I would do the work initially and get things ticking over between them and the professional and then try and help make the relationship sustainable. We establish how the professional is going to keep in touch with the family and how their needs will be met.
In my relationship with a family I hope to reach a point where they are not dependent on me and they don’t need me to solve each situation they come across, but they know where I am if they need me.
I see good social work being about someone knowing where they can turn to when they need help, but it’s also about giving them the confidence and the knowledge to do as much of it as possible. Good social work is about empowering people to do what they can for themselves whilst knowing that the way in which organisations operate and society’s approach to disability and health can make a difficult situation even more challenging.
An important part of what I do is trying to get people to work together, as it is so much better for the families we care for. They can understand and accept things if they can see that agencies have met together, talked about a situation, agreed the action that needs taking and then gone away and are working on it. It can really help them, even if there is no easy answer, which there often isn’t.
There are a huge number of professionals involved with each family and lots of clinics and appointments, but there is often no one person coordinating everyone involved and no joined up process to it. That is where my background and having the opportunities within this role help. I can ask questions about the plan of action. The families like to know what everyone is doing and to understand how a situation is being resolved.
A lot of their challenges are really big and housing is one that is really difficult to tackle. There are societal issues around housing stock and the process you have to go through to get appropriate social housing. I’ve been working with a number of families who have been on a priority waiting list for several years. It may be that a family needs adaptations to their own property, which can include bathroom and garden access, access in and around the home, including stair lifts and through floor lifts.
While a family is waiting for these needs to be met, they can be living in quite unsuitable accommodation, which is really challenging for them. I try and move things along to make sure that everything that can be done is being done.
As I previously worked in Local Authority social work, I can use that knowledge to help families. I’m able to act as a bridge between them and the Local Authority, who are supporting families, but are always conscious of the resources available. I am often helping people access those resources and advocating for them so that they meet the criteria.
Face to face contact with people is really important in social work, but during the pandemic and through the various restrictions, I managed to do a range of tasks over the phone. But as a social worker, I prefer to go and see the child or young adult’s home and be with them in their environment.
It means a lot to a family that you will go out and see them and find a time to go and live in their world for a bit. Especially if they are unhappy about their home. There is nothing that quite replaces meeting someone face to face and sometimes it is easier for a family to be able to stay at home and have me visit them there. The purpose of my visit may be to help them work through a particular application form or understand a piece of legislation, but I will invariably end up listening to their concerns and talking them through their anxieties or frustrations.
I work with both children and young adults. It is good practice to see someone on their own and I always make a point of doing that if it is appropriate. I’m working with a young adult at the moment and I see him and then his mum separately. However, she is a big part of his life and of his care, so I am really careful to be clear with each of them what I am sharing with the other.
There is a huge amount of legislation and information to be aware of. Adult care legislation and child care legislation are totally different. For example, the legal context and how that underpins how a child with a disability gets support from a particular service, what that support looks like and how it is provided, is completely different to adult law. This has implications when I’m thinking through what someone might need and how to get it.
Above all, I aim to be a voice for the children, young adults and families who are supported by Naomi House & Jacksplace. Those families are under tremendous pressure physically and emotionally in their everyday lives, and I want to be there for them emotionally and practically. I want them to know they have a person they can go to; a friendly face who will help them navigate the complexities of their lives.