Solidarity, progress and system change

Former hep C patient and Just Treatment patient leader, Clare Groves, has been working as part of our team for the last six months. Sadly, she’s returning to her work with the NHS. Here she shares her top three lessons from her time in the team.

My time working as organiser for Just Treatment comes to an end today. It doesn't seem possible that the six months is already over as I feel as though there is still so much more I could do, especially as I had to take some unplanned time off.

I have learnt and grown from my time working here, and would like to share three things that have stood out for me the most.

  1. Solidarity amongst patient groups is vital, though we all have different illnesses and diseases that need a variety of medications, and all have different symptoms and outcomes, we are all fighting for the same cause - access to medicines that are being denied us because Big Pharma are holding the NHS to ransom over high prices. We are stronger together!

  2. Progress has been made, with Crown Use licensing being debated in Westminster and the Scottish Parliament, and the Orkambi campaign generating significant media and public pressure for action. It is important that we acknowledge these victories no matter how small.

  3. Systemic change is needed so that every single person that needs medication or treatment to improve or save their lives can access it easily and without having to fight and petition for it, or as is the case for some patients, self-fund or crowdfund to pay for the treatments they need.

Some of the highlights of my time working with Just Treatment were of course winning the NESTA New Radicals Award 2018; joining the Orkambi march in Westminster in November; and being able to take part in the US-European Access to Medicines Alliance Meeting in Brussels last December.

Solidarity amongst patient groups is vital

There is still so much to do and I intend to continue with Just Treatment as a Patient Leader. I shall also be returning to my role in the NHS full time. Just Treatment’s work is still so important in the fight to save the NHS. Financial constraints are filtering down to every aspect of services, even mental health, the field I work in. There have been changes to the treatments being offered to clients due to high costs and cutbacks. Some clients have been stable on the same medication for years but are now having to change to something else, this can bring relapse, different side-effects and other upheavals. The fight for fair priced medicines is a fight for the future of the NHS and better care for all.

It has been an honour to be involved at such a level and to have met some fantastic patient activists. Thank you all for your continued support.

Diarmaid McDonald