20. Getting our head around stakeholders

Are you a DAPPLE stakeholder? You are reading this blog, so the answer is YES! But what is a stakeholder? And why do we want to know more about them – about you, and all our other stakeholders? We have spent a lot of time thinking about this.

First of all, what is a stakeholder? This is a confusing jargon word for many of our team members. Nothing to do with holding something like these. Nothing to do with owning a stake in a holiday home either.

For our DAPPLE project, a stakeholder is interested in DAPPLE because it matters to them in some way. Palliative and end of life care for people with a learning disability: perhaps the issues affect them, or they can make a difference somehow. Perhaps they are simply interested. Or perhaps they are not aware of any of the issues, but even so, they might have an influence on them (for example, funders of national healthcare services).

Our job is to find out:

• Who are our stakeholders?

• What are their problems?

• What can DAPPLE do to help?
  

Stakeholders can be people or organisations. Some spring to mind immediately. There are people with a learning disability. There are families. Carers, support workers, doctors and nurses. Managers in hospices and learning disability services. Social workers. Friends. Politicians. Hospitals. Local councils. Charities, like Marie Curie or Mencap. The list is rather long! Back in January, we held a workshop with the whole DAPPLE team. Here we all are, ready to think together about who our stakeholders are.

We got out a stack of post-it notes, one for each stakeholder we could think of. It only took 10 minutes for the table to be covered. We almost ran out of post-it notes. DAPPLE is trying to reach all its stakeholders, and find out about all their problems… We could clearly see that this is a big and daunting task!

We have tried to organise the post-it notes into groups, so we can get our head round it. It’s a work in progress, but it now looks something like this.

Now, we are starting to list out their problems. Below are just some examples. It’s the job of DAPPLE’s researchers to fill in the gaps. We are also helped by our Research Advisory Group, which includes representatives from most of these stakeholder group. We meet with them twice a year (our second meeting was this week) and ask them for help in-between when we need it.

I think it is useful to map our stakeholders (and their problems) in this way, because it helps me to see where the gaps are. Which stakeholders do we not know much about yet? Which problems do we need to find out more about?

And then, hopefully, we can start to think about solutions that work.

It also helps me to see why finding good solutions is so difficult. The map is so very complicated, with lots of overlaps! Most problems cannot be solved without involving several of the groups, but each group has different challenges and priorities.

A real-life story

Here is a story that illustrates this, told to us by the manager of a residential home for people with learning disabilities (I’ve changed some of the details). A man living in the home was reaching the end of his life, and now needed a lot more care. The manager and his support staff really wanted to provide this care, and were willing to learn the necessary skills (perhaps with the help of district nurses, the local palliative care team and the learning disability nurse). However, the home where he had lived for decades could not get the funding to provide the required level of nursing care, so he was moved to a nursing home – which nobody wanted.

The solution to this problem would involve everyone, from national policy makers (is integration of health and social care still a pipe dream?) and commissioners (who funds what?) to local services (can they provide this home with the training and support they need?) and the actual people involved (can this man, or those close to him, communicate his wishes? What does he need to feel safe and well supported?).

We all have our work cut out.

You are a stakeholder. Do let us know what your problems are. What change would YOU love to see?

Written by Professor Irene Tuffrey-Wijne, (Project Lead, Kingston University)