The First Steps programme - improving the experience of diagnosis

Michele Hu, consultant neurologist and Excellence Network lead for the Thames Valley region, speaks about the successful establishment of a programme exclusively developed to support people with their diagnosis of Parkinson's - which is about to be rolled out more widely.

Can you explain more about the First Steps programme?

The First Steps programme was devised to address the needs of people right from the point of diagnosis with Parkinson's. It is particularly focused on equipping both individuals and significant others psychologically to come to terms with the condition and the change it represents in their lives.

Newly diagnosed patients are invited to attend the programme along with a partner, friend or family member. The programme is led by volunteer facilitators who themselves have Parkinson's.

The first day covers issues like the impact of their diagnosis, addressing fears and misconceptions around the condition and making the most of the services they can access.

A follow-up day 6-8 weeks later covers a review of their progress including the successes and challenges they've experienced, their rights and practicalities related to their diagnosis such as employment and driving, an exercise session with a neurological physiotherapist and a session on relationships and supporting someone with a new diagnosis.

I was sure that something was needed. Ever since I took up my current post, I was told by many patients that they had had a poor experience of being diagnosed.

The model is based on the residential programme offered by the European Parkinson Therapy Centre in Italy. This uses an approach to the management of the early stages of Parkinson's based on 4 pillars of medical, physical, lifestyle and motivational therapy.

The Parkinson's UK Oxford Branch took great interest in this approach and was keen to be involved in developing something similar in England. This group has been instrumental at every stage of getting this up and running, from devising the programme through to running and evaluating it.

What were your thoughts when the programme was first introduced?

I was sure that something was needed. Ever since I took up my current post, I was told by many patients that they had had a poor experience of being diagnosed.

I don't necessarily think that we were unique in this but clearly something had to change and this programme would certainly offer something that was then not available.

I did have some concerns about it being a programme delivered by non-professionals and what patient uptake would be. However the more involved I've become, the more I can see both how well it is organised with clear training and monitoring protocols in place for the volunteer facilitators. The strength of the programme comes from the people affected by Parkinson's involved.

I have also seen how much patients have valued the programme with particular praise for the wealth of information shared in a relaxed, open atmosphere and the chance to meet with other people in a similar situation.

What's happening as part of the upcoming roll-out?

I have also seen how much patients have valued the programme with particular praise for the wealth of information shared in a relaxed, open atmosphere.

The plan is to roll the programme out to each Excellence Network region by 2019. 6 regions have elected to become early adopters this year, with the first sessions in these areas due to begin in the autumn.

It will certainly be useful to see how this approach works in different regions, particularly those more rural and with different demographics from my region.  

What advice would you give the Excellence Network leads involved in this?

I would say that something like this has the potential to make your whole service better.

Not only will it meet the needs of people when they are first diagnosed, it sets up a better relationship with your patients that can continue for their ongoing management.

I would definitely advise them to publicise their programmes widely and to ensure the wider team including the Parkinson's nurses signpost to it.

What else can other professionals do to ensure their patients get vital information and support?

It's always tricky to find the balance between being realistic about the situation and being positive about the diagnosis. 

I find it useful to focus people on exercise and taking care of their mental health as this has been shown to be effective right from diagnosis. I emphasise the benefits of these alongside their medication in keeping with the 4 pillar approach.

I also provide patients with an A4 folder of information. This generally includes 3 publications from Parkinson's UK, information from the DVLA (because of the need to inform them of the diagnosis), details of the Oxford Branch with key contacts, information about First Steps and a summary of local exercise, dance and therapy services, both NHS and private.

I feel it's important not to be afraid to promote private physiotherapy as it can be a really valuable service. You can find a local practitioner via the Chartered Society of Physiotherapy website.

I also am happy to give details of personal trainers if they have been recommended to me by other patients. 

I also take the opportunity to introduce the idea of getting involved in research. For many, to know that work is happening to find a cure and better treatment is reassuring and to be an active part in this can be very empowering.

Tell us your ideas

If you have ideas about how to help people who are newly diagnosed with Parkinson's, tell us more at [email protected]

Michele Hu

Michele Hu is consultant neurologist and co-principal investigator at the Oxford Parkinson's Disease Centre (@OxfordPDCentre on Twitter) and Excellence Network regional lead for Thames Valley.