Mum refers to the place as ‘Hell’ – Our Advocate Emma shares more about her role

I have been supporting a family carer for a number of years now with the discharge planning of their daughter from long stay hospital. Mum refers to the place as ‘Hell’ it is a private hospital for people with mental health and learning disabilities.

Her daughter is a young lady who loves crafts, shopping and has a wicked sense of humour, but she has been stuck in long stay hospital for many years now. She has complex support needs and needs a bespoke support package to enable her to live in the community with 24 hour support.

She did, in fact, move out over 3 years ago but it broke down in less than 24 hours. Lessons do now seem to have been learnt, that the most important person in her life is her mum, therefore involving her mum and really listening to what she thinks will work and what won’t is crucial to getting her next discharge right.

Mum is devoted to her daughter but often goes to meetings with 10+ practitioners in, pretty daunting for anyone. Sometimes it is really difficult to have time and space to think about the proposals and options when you so desperately want to get the person out of the hospital. Sometimes she has felt she would agree to anything just to get her out. With support from our advocacy service, she has been able to question plans to move her and to ensure that the next move is truly person centred around her and not the push to get her out of hospital and save money.

We aren’t there yet… but we are moving closer each day…..

Emma explains the role of Advocates at Suffolk Family Carers

As an advocate, our role is to support a person to voice their views, wishes and feelings and to be involved in decision making. Sometimes the decision is about them directly or about the person they care for.

We have advocated for family carers for many years now and understand that often they feel disempowered when in a room full of ‘professionals’ who think they know best. Often the family carer is actually the expert in the room, or at least the expert in the person they care for. But sometimes emotions run high and separating out the person’s needs/wishes from the family carers is difficult. We try hard to support the family carer and/or the person to voice those thoughts and to fully explore the options.

Sometimes that means researching legislation and ensuring a person receives all the support they are entitled to, not being afraid to ask for the support they are entitled to or ensuring they are not made to feel guilty for asking for more support.

Sometimes that means negotiating with statutory services about how best to achieve something when there are differing points of view within a family or between a family and statutory services.

Sometimes it means supporting the person to make a complaint about the service they are receiving or not receiving.

Every day is different and every person we work with has a different story. I love my job because I meet the most amazing people and get to share some of their experiences, the highs and the lows.

If you would like to find out more about our Advocacy service, please call our Information Line on 01473 835477 or visit our Advocacy page.