Listening to Families

I’ve just got back from a meeting with families in Wales. It’s very late – and I’m meant to be unwinding, going to bed, getting ready for a break to Cornwall… but I want to get this down now.

The meeting was part of our (Dimensions) Executive Team meetings, where the top bods go around the country listening to staff, the people we support and families.

I love the fact that we’ve now included families…well I would, wouldn’t I?

I also love working for an organisation that is determined to do this, to the point they employed two family carers (both with years of experience of working with a range of other family carers) as Family Consultants to give a family perspective, facilitate meetings like this, ensure the family voice is heard across the organisation (including training) and more importantly perhaps that they employed us because they accept that they are not getting everything right!

The fact that they are not getting everything right and accept this is a pretty good start in my book because I don’t know any organisation that is getting it completely right. The fact that they recognise this, want to get it right and see the huge value in families as partners is what led me to working for them in the first place.

It was a tough decision to take this job. I thought long and hard before even applying. Throughout my working life (voluntary and paid) I’ve kinda been my own boss…bit of a loose cannon! Could say what I liked and didn’t care who I pissed off in the process. My agenda…and the only agenda was people with learning disabilities (people like G) and their families (families like mine) having a good life, being respected, being valued, involved and understood. Working for a provider organisation felt a bit like “moving over to the dark side”

At my first meeting with my new CEO he told me “Your job is to be the stone in my shoe”… “This is going to be a tough job, but I want to hear everything, good and bad”… It put my mind at rest, I felt I’d made the right decision!

Being a bit of “tweeter” I’ve observed lots of comments about large providers recently on the #justiceforLB feed (and others). Most of them negative and I totally get why, but it made me think about whether I was compromising my own integrity… a rebel and campaigner at heart!

At the same time though I was feeling rather defensive about the organisation I’ve worked for, for the last two years because although I know we are not getting everything right either, we’re the first to admit it. I’ve never worked for an organisation that “beats itself up” so much and yet never shouts about some of the great stuff they’re doing …and there really is some great stuff!

As a Family Consultant for Dimensions my only agenda is still, and will always be….people with learning disabilities (and their families) having a good life, being respected, valued, involved and understood. My integrity and values remain the same as they always have and I’d walk away tomorrow rather than compromise this!

After two years on “the dark side” I’ve learned a lot. I’ve realised that changing attitudes and cultures of working is the toughest barrier. But it’s a barrier that has to be knocked down. It’s a long old slog…. will probably take longer than it should…and that’s too long for too many people. In saying this I’m glad I’m on the inside trying to influence and create some change. I’m glad the Ethos at the top of the organisation is so spot on. I don’t have to influence, they get it already.

It turns out that the dark side wasn’t so dark after all because I’m working with people who have the same values and passion! Filtering all this down to ground level is a bit harder to do in a larger organisation. It will take time and it’s not as easy as it appears from the outside. It also turns out that what should, in theory, be black and white and pretty straightforward, isn’t always.

There were however some strong messages from the handful of families that came along to the meeting tonight that are pretty straightforward. Some stuff is working really well, other stuff isn’t. We’re glad you’re listening and appreciate being asked but actions speak louder than words and we need some action. (Proof is in the pudding and all that!)

I expect to hear about many more problems, difficulties with staff/family relationships etc…and I’ll carry on doing that as long as it takes. Because families matter… and being real partners with the organisations who provide support to our loved ones is the only forward if we are really going to achieve the quality of support our kids/relatives deserve.

About Oxfordshire Family Support Network

Oxfordshire Family Support Network (OxFSN) is a not-for-profit organisation run by and for family carers of people with learning disabilities – both children and adults. Oxfordshire Family Support Network (OXFSN) was set up in 2007 by family carers who wanted to use their experience to help others in the same situation, based on our belief that family carers are experts by their lived experience.
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2 Responses to Listening to Families

  1. says:


    First of all a big thank you for your blogs which are both inspiring and truly heartfelt! I am passionate about delivering training and support to the health and social care workforce as excellent support is what we should all expect at all times! Sadly I know that this isn’t always the case and there is just so much work to be done! I would love to have a chat with you about this and how I might be able to help.  I’m just finishing a stint with a Local Authority, supporting them to implement person centred approaches within the new Education, Health and Care planning process (needless to say I need a lie down!), but am back supporting young people, their families and the providers to understand how life works! Is this the best way to chat or do you have another email address that I could use? Have a fab break in Cornwall. I’m a West Country lass so understand just how therapeutic a break in that neck of the woods can be! Enjoy x Thanks again for your sharing.

    Mandy Mandy Spray

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