Oct 282019

Gofal Clefyd Niwronau Motor De Cymru / South Wales Motor Neurone Disease Care NetworkLast month, Swansea Bay University Health Board UHB, Cardiff and Vale UHB, Aneurin Bevan (UHB), Cwm Taf Morgannwg UHB and Hywel Dda UHB were one of the nine winners of the NHS Wales Awards 2019 for ‘providing services in partnership across NHS Wales.’

We speak to Dr Idris Baker, Consultant in Palliative Medicine and co-director of the award-winning South Wales Motor Neurone Disease Care Network.

What is your experience with improvement?

We got started with improvement because we were all aware of problems that needing fixing, of something that needed improving. Although we got involved at different stages, each of us could see that care for people with Motor Neurone Disease (pwMND) was great in places but lacking in other places. It was patchy and inequitable. For pwMND in South Wales, as in many parts of the UK, there were wide variations in access to well-coordinated care.

How did you get started?

We started by understanding where we were and the strengths of that starting point. We had patients and families wanting to work with us to improve things. The right expertise to provide good care was in place, there was interest in spreading it more equitably across the region, and there were willing partners in the statutory and – crucially – voluntary sectors.

Voluntary sector support brought initial investment, peer learning from other regions and political capital. User involvement helped to make sure we were focusing on what was needed, not just on what seemed obvious to us.

We built coalitions of interest across South Wales.  For instance, we harnessed the voluntary sector’s support by showing commitment to improve and to help deliver some of their aims.  We got the interest of acute hospitals by showing that well-coordinated care reduces unnecessary admissions and interventions.  With each potential partner we were able to identify their interest in MND and show how the improvements we aimed at could address that interest.  We were able to find substantial areas where the different parties interests were sufficiently closely aligned that they could work together to achieve the same improvements.

How are you using improvement today?

Today we continue to seek improvement.  We know that although there is much less inequity than when we started, there is still some.  People in some parts of the region are still more easily able to access some interventions.  And while provision is more equitable, that does not mean it is good enough.  We are using available measurements – measures of outcomes and experience and standard national audit tools – to identify where things can be improved further and to demonstrate that improvement when we have been able to act.  The user involvement element of that is important, and although we get lots of spontaneous positive feedback we actively seek out comments about what we could do better or what we need to change next.

Some barriers are harder to overcome, but we have learnt that we don’t need to win every time.  Each success, each improvement, has followed a few failed attempts so we have learnt to see those failures as merely a deferral of success.

Gofal Clefyd Niwronau Motor De Cymru / South Wales Motor Neurone Disease Care NetworkWhat value has improvement brought to your team?

Each of us has taken huge satisfaction from being involved in this.  We have learnt, and have found ways to apply that learning to other aspects of our work; we have enjoyed seeing the benefits our patients experience, even when they don’t know how things were before; and we have enjoyed being able to share that learning with others in the region and across the country.  Simply being involved in people’s care is deeply satisfying, but we have found that improving the care they get multiplies and deepens the satisfaction we get from our work.

What we experience working together is a scaling up of the individual satisfaction that comes from seeing things improve.  We’re able to celebrate each other’s success.

What would you say to anyone else getting started with improvement?

Ask yourselves some key questions. We knew where we were starting from but it took us a while to work out how to broaden the interest in improving it:

  • What is it that needs to improve?
  • What allies can you find and why are they interested?
  • What gaps are there in your own knowledge of the field or of improvement?
  • Who can you enlist to plug these gaps?
  • How can you harness their interest, how can you help them see that your improvements will help them and how can they support you?

Involve users early on. Work out what needs to change and – just as importantly – what things you should keep the same. Test ideas for change and test the implementation of the changes you make.  And whatever changes you consider, remember that some groups of people find it harder to access health care.  So ask yourself whether your ideas will tend to help with that, to narrow the gaps in access, or whether the changes would make it easier for people like us, people who already have the easiest access to services.  Your user involvement will help with that.  Our focus has been on people with a rapidly worsening disability who are losing their voice and living with a condition no one seems to know about, all things that tend to make access to care harder, and we’ve consulted users on whether our changes make it easier for them.

Build alliances everywhere you can.  Think laterally about which parts of your organisation might be interested in your approach, which other organisations, or which charities or social care organisations or businesses or anyone at all.  We have a small core team, just a handful of colleagues, but we’ve been able to build a network of hundreds of people and scores of statutory and voluntary organisations because we spotted that they all have an interest in getting this care right.

Don’t be too ambitious to start with. It’s fine to have huge ambitions but you want to understand what small steps you might be able to take, what small improvements might come early on, and you want to get used to not succeeding first time every time.

Reflect on where you went wrong, and if you can see a better approach, change to that.  We’ve got plenty of things wrong. We’ve had to learn to regroup and change tack and we’ve found we sometimes succeed the next time.  Either way you can learn from your failures. Give yourself and your team permission to fail.  Failing is much better than not trying.

Use data. Find the data that shows what needs to improve and work out how you will demonstrate the improvement you make.  If you don’t know how to find and use the data you need, find people who know and can help you.  Ask the improvement teams in your organisation. Don’t be daunted by what you don’t know or can’t do; using data is not always as complicated as it first seems. We’ve needed to find experts in outcome measures, in psychological measures, we’ve needed to get involved in national audits to harness their measurement power even though parts of them are a bit tedious, and we’ve started working with people running national databases so that we can compare populations.

And finally, remember that there is always something to do next.  Look for the next thing.  You will achieve improvement, but you will never finish. Celebrate, but don’t stop.

Read about the Award entry here

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