Alpha.

From the very beginning, this service transformation was set to be a big challenge. With an estimated 20% more people being diagnosed with Parkinson’s within the next decade, scaling our information and support services to meet the needs of so many more people living with Parkinson’s and their loved ones now and in the future, simply had to be a top priority for us.

During our six month discovery, we did research to understand the user needs and what services we can offer to address those needs. In alpha, we’re testing to understand how these services would work, if they would work at all and what the impact would be.

We’ve been in full swing for four months now. Alongside testing a new direct referral process working with healthcare professionals in the NHS to refer people into our service at the point of diagnosis (more on that to come), we’ve been doing card sorting, facade testing, appetite testing and even role play to test the many assumptions we still had across the service pathway we’d designed. The team has become a teeny-weeny-little-bit obsessed with data of late and we’re learning a lot. The blueprint we plastered on our wall at the end of discovery is forever changing. Just as it should.

A recap of our approach

For those of you new to this journey we’ve been on — last year we brought together a team. A team that looks a bit like this like this:

This, in itself, feels pretty transformational for us an organisation. A truly cross discipline team with — we believe — all of the skills needed to make this work, embeddable and scalable. Everything the design team works on goes through a feasibility framework and demand modelling by the operational model team. That way we can be confident we’re not only doing the right thing, but we’re doing it right.

Our future pathway principles

We are designing one service pathway. But crucially one that is flexible according to need and someone’s agency to seek support. We’ve actively recruited people to speak to that don’t currently access our services to hear their stories and work alongside them to think about how we can design this service pathway to work for them so in the future, we can be there for them.

So we’ve designed for the needs of people who are (what we’ve called) ‘low agency, high need’. For example people who are isolated, have limited physical communication abilities, or don’t have the time or money to reach out for support etc. And ‘high agency, low need’ users. For example people that are tech savvy and connected, have the experience and confidence to reach out for support, have close family and friends around them etc.

To underpin everything we’re doing, we have some core service principles:

• We are the people who get it, connecting early to build relationships and trust
• We listen and learn what people need to deliver the right information at the right time
• We connect people to opportunities in our vibrant communities
• We recognise and build on people’s skills, knowledge and confidence to live well with Parkinson’s
• We support people from diagnosis to the end of life, flexibly and according to their needs and agency

So at the moment Parkinson’s Connect looks something like this….

Getting diagnosed with Parkinson’s

Some of the key assumptions we’re testing in Alpha

1. Health care professionals would be able and willing to refer
2. Loved ones will want to be referred too
3. People want to engage with information in days and weeks immediately after diagnosis

How are we testing?

We’re working with the NHS in three locations across the UK (Cornwall, Northumbria and London) to test a new online referral form. People are then offered some personalised content and the opportunity of having a one to one conversation with one of our advisors.

Live well with Parkinson’s

Some of the key assumptions we’re testing in Alpha

1. We can quickly understand people’s needs in a consistent way
2. People have the information they need to choose the support channel that’s right for them
3. The right training and the right tools will enable staff to identify and address service user needs
4. Friends, families and carers are more likely to access this service and want access earlier in their journey
5. We know when people will need to hear about planning for life ahead
6. People with Parkinson’s will want to access this support

How are we testing?

We’ve been working really closely with our adviser service on real cases doing things like card sorting, testing prototypes around personalisation, facade testing and some appetite testing on our main website.

Managing more severe symptoms

Some of the key assumptions we’re testing in Alpha

1. People will know when they need support with rights
2. Family, friends and carers will need an ‘advocacy’ service as much as people with Parkinson’s
3. People will require support around common theme

How are we testing?

For this one we’ve got live tests running with our Advisor staff to help us understand how we can support people to self serve and how we can set ourselves up to ensure we can work alongside those in need of more intensive support.

We’re on the final stretch of Alpha and at the early stages of bringing everything together with a new operating model and a version 2 of the blueprint that will inevitably look quite different.

This change is big for us and we know we’re being very ambitious. Beta kicks off in May and will start with some tough conversations about what we prioritise and what our future roadmap looks like. In the meantime, we’ll be doing a short series of blogs going into more detail about our Alpha phase — what we’re testing and how and what we’ve learnt.

If you’re interested in hearing more or have any thoughts please drop us a line. In the meantime, as ever, back to it.

Polly

Service transformation lead