A work in progress

It’s been three years since G moved into his own home and just when I was starting to relax , feeling more than a little smug and thought everything was great we’ve hit a few problems. Nothing major, but enough to get me rattled and gear myself up for being perceived as “difficult“ Again!

Although I could obviously do without the added stress it’s made me realise, or rather reminded me, that actually for parents/families of people like G it’s never really done. However well things are going, however good things are, it really is always a just a work in progress.

It’s a timely reminder too because of the work I’m doing…

I’ve been working for Dimensions (www.dimensions-uk.org) for six months now and I love it. I’m really impressed with the organisation, its ethos and its direction of travel. When the Chief Executive says at one of the first meetings you attend “You see, this is why we have to involve families” and tells you “your job is to be the stone in my shoe” (would have preferred grit in an Oyster Steve!), then you know what you have to say is being taken seriously, listened too and acted upon… and you know the organisation you are working for are serious about what they are trying to achieve. Okay, okay, I can hear you say… well I would say that wouldn’t I! I’m employed by Dimensions, they pay my wages… but I can say categorically that if I didn’t believe in the organisation I was working for I would walk away tomorrow! (I pride myself on my integrity and also have another job and plenty of other work I could do!)

Along with (or rather as part of) working on their personalisation journey, Dimensions wanted to employ a Family Consultant to help them improve the way they work with families of the people they support. The main, essential criteria being that any applicant had to be a family carer. Liz and I were lucky enough to get the job. We both work part-time and share the full time post (while both doing other part-time jobs) and Dimensions got two, very like-minded family carers for the price of one. We are able to bring a family perspective to the role and to the organisation, both from our own, very different experiences and the many other families we’ve worked with over the years.

After six months work we’re preparing to start rolling out our Family Charter. Our (Dimensions) promise to the families of the people we support about how we will work from now on. It’s a massive job, involving a lot of work but it’s basically about getting thing’s right (and making things better) for the people we support by making sure that the people who care about them most continue to be involved in their lives and continue to valued and have a say in how they are supported. It is and has always been the only way forward in my view and I’m very excited about it.

However, while I’ve been beavering away on all this and trying to get things right for other families, it turns out things haven’t been so great with G (who knew?) His behaviour has apparently been rather “challenging” of late. We haven’t noticed any real difference, he’s always been fine when he’s come back to visit us but, at his annual review there were several issues mentioned regarding his behaviour (first we’d heard!)

I’m not going to go into details because there’s stuff I need to do first. I have a lot of respect for the organisation who provide his support and his staff team, I believe in team work and I want to try to work it out with them.

Suffice to say the main problems have occurred through lack of communication ( both his with them and there’s with me) and what appears to be a lack of true personalised support, or rather a slip in what we originally agreed and thought was happening. Ironically these are the very things Liz and I are trying to get right for families who have a relative supported by Dimensions and even more ironically (for me) the things I thought we’d already got sorted for G.

All of this has confirmed my belief (if it really needed confirming) that as families we need to develop a greater trust in the people and organisations who support our loved ones. It’s made me realise how easily things can slip if we take our eye off the ball. It’s made me all too aware that it doesn’t take much for small concerns to have a knock on effect and have bigger implications. For instance, because the communication has slipped it’s made me question everything else and rocked my trust in them. It’s made me feel like I have to micro manage the situation, and become a bit of a nag. This is exactly what I didn’t want to be doing. It’s not good for me and it’s certainly not good for them but it feels necessary at the moment!

Trust has always been an issue for families, it takes time to build and is vital.  Post Winterbourne families distrust of services is understandably at an all time high and this trust is more important than ever before. People who support our relatives need to be aware that our anxiety levels are heightened to a state of red alert at this time, and who can blame us.

A friend of mine recently said …”You can never be too careful, too vigilant, to nosey, too protective, too anything when it comes to our children” I think she has a point and the last couple of weeks have been a bit of a “wake up call” for me personally.

I firmly believe that good communication is the key to building real partnerships with families and I’m working hard to address this for G and the people he employs to provide his support. Had I known what was going on earlier with him then I could have helped them address the difficulties right from the start. Communication is a two way process and it needs to be honest, open and regular.

Our Family Charter sets out how we will do this for families who have a relative supported by Dimensions and what families can do in return. We hope it will open the door to developing real partnership and I’m very proud of what we’ve produced and by the way that the organisation has embraced it. This is only the start and Like everything else  it has to be a work in progress, be continually assessed to check what’s working and what’s not working.

As for G and his Provider organisation, well, let’s just say I’m on the case. I’m lucky that they are being really responsive to some of my suggestions and are already implementing some changes using person centred thinking tools. I’m lucky too that because of the work I do I have the skills and the tools at my disposal to work with them to help try to turn things around for G. It’s still challenging to get things right and it makes me wonder, like I always do, how other families cope and how do they tackle such things if they don’t know about these tools and this way of thinking. It’s made me want to make sure they do even more than I did.

The personalisation journey Dimensions (and other providers) are on has to be a shared journey which includes families and it’s a huge challenge for all of us to get this right! True personalised support just like true partnerships is always going to be a work in progress and so it should be, but this journey is worth taking and the work worth doing if it stops cases like Winterbourne ever happening again and builds better relationships based on trust with families.

As for me, well, let’s just say I’ve come out of “smug mode” and am learning a lot by this experience… I’ll keep you posted!

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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