Relationships between families, providers and commissioners [2]

At our third Stronger Together event, we brought together families and providers, along with some colleagues from NHS England to look at what makes a difference and what can we do now.  It wasn’t about changes in legislation, it was about transforming the way we work and working with what we have.

Let’s be honest, legislation without true accountability is as useful as an ashtray on a motorcycle.

In our recent post, we talked about what the families and providers had to say about when relationships work between families, providers and commissioners.  However, in order to be realistic, we also have to talk about when relationships don’t work.

When it didn’t go well.

General:

  • When staff and home is 300 miles away, transition is difficult.
  • Hospital don’t like home staff being allowed in unit so no way for young person or family to get to work together before discharge.
  • No communication with the other Borough’s teams
  • Young person was seen as a diagnosis, not as an individual
  • Family were seen as the problem
  • Family did not get to share their vast knowledge or insight into what helps, works and doesn’t for their child or young person
  • Autism seen as a mental health issue
  • Not enough understanding of behaviour being a symptom

Parent carer feeling alone, stressed and like a failure

Providers:

  • The families did not get any chance to know the day staff, the night staff or the community staff
  • Communication between the staff, the provider and the families was virtually non existent.
  • Home staff had different training from the community staff and from the hospital staff
  • No clarity on who was responsible for what
  • No one took responsibility, it was always passed on to someone else who passed it on quickly to another person
  • Restraint training not available for home staff

Commissioners:

  • Looking for “spare bed” rather than bed in most suitable placement
  • Planning time not taken into consideration.
  • Staff turnover a huge issue due to limited funds being made available
  • Felt as if commissioner preferred the hospital setting as this came out of a different person/dept’s budget.

I kept thinking of the quote “Fail to plan, plan to fail” but felt as if I was the only person worried about this.

 

How did this feel?

In our post about when it went well, we also looked at the impact of this on the parent carer’s health.

We asked parents and providers how it felt when it went wrong.

When the system goes wrong, how does it feel

 

As you can see, the words “helpless”, “panic” and “isolated”/”alone” stand out.  When people feel frightened, stressed and anxious, the negative impact on their health, both mentally and physically, is immense.  As the results of our parent carer health survey show, there is often very little, if any, support or practical help and we often are not in a place, mentally or physically, to go searching for what support there is.

However, as our recent post showed, when things go well – often down to relationships, communication and good planning, things change.  Everyone feels better in themselves, relationships thrive and the ultimate goal of staying out becomes a real possibility for our child, young person or adult.


Coming soon:

Don’t miss out on this series of posts from our Stronger Together event.  Remember to subscribe for updates directly into your inbox.

Coming soon are posts on what questions parent carers need to ask providers, what questions providers need to ask parent carers, what do we actually want for our children and what can we do now to make transforming care a reality?


Thanks to:

With huge thanks to Avenues, Certitude, Choice Support, Dimensions, Look Ahead, MacIntryre and United Response for sponsoring this event and making it possible to bring everyone together.

 

Mum to three great kids, each with a different SEN.
Transplanted from the NW to the SE.
Co-founder and Director of Bringing Us Together

Debs Aspland

Mum to three great kids, each with a different SEN. Transplanted from the NW to the SE. Co-founder and Director of Bringing Us Together

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