Tackling ovarian cancer inequalities – an update from our IMPROVE UK programme

Earlier this year, we began our landmark IMPROVE UK programme to address inequalities of care across the UK for women with ovarian cancer. Our Head of Policy and Research, Marie-Claire Platt (pictured above, far right, alongside members of our Patient Advisory Group) reflects on the progress and challenges we’ve encountered so far.

What is IMPROVE UK?

IMPROVE UK is the first programme of its kind, designed to significantly improve survival rates by ensuring that no matter where a woman lives in the UK or her ethnicity, she can get the ovarian cancer diagnosis, treatment, and care she needs.

This is vital because while the best survival rates in the UK match the highest in the world, we currently have one of the poorest average five-year survival rates in Europe. Women today face unfair inequalities in accessing the best treatment and care based on where they live, their age, and ethnicity. We need to narrow the gap to ensure that every woman has the same chance to survive her disease. And making ovarian cancer a survivable disease is why we’re here; it’s our vision and we need to make faster progress to get there sooner. 

That is why we bid for, and secured over £1 million from the UK Government Tampon Tax, and turned those funds into our innovative IMPROVE UK programme.

What does the programme look like?

In the first phase, we have awarded seven grants for one-year pilot projects that seek to address these inequalities directly in NHS Cancer Centres.  At the end of the project, the pilots will share their learnings with other Centres across the UK.

Awarded across all four nations of the UK, the pilots target a wide range of issues in the current system, in a bid to improve high-quality care for more women and therefore improve survival rates. These include: 

• Introducing pre-habilitation services for women, to ensure more can access lifesaving treatment
• Improving the uptake of genetic testing, especially in BAME communities
• Reducing delays from diagnosis to starting treatment

Six months in, how are the pilots progressing?

Awarding pilot projects directly in NHS Cancer Centres during the Covid-19 pandemic was an enormous challenge. But it also presented an opportunity where nothing was business as usual to try something new. I have been bowled over by the commitment of our clinicians, nurses, and other healthcare professionals who are leading our pilots. Their commitment to our shared vision that every woman has the best chance of survival has kept all seven of our pilots on track. Despite budget pressures, staff shortages, and an overstretched NHS, some pilots have been even more ambitious than their original aims.

Some of the many highlights so far: 

• Working with our fantastic Patient Advisory Group, who have steered IMPROVE UK and inputted into all the pilots to make sure patients stay at the heart of all the work.

• In Belfast, Bath, Bristol, and across Wales, patients are now benefitting from the creation of our pilot pre-habilitation clinics. Our experts across three pilot teams have come together to agree on a common way of collecting their data, this means when the pilots have ended, they will be able to pool their results to see more clearly if the pre-habilitation clinics have resulted in more women receiving treatment. 
• Our Wales team was nominated for a Moondance Cancer Award to recognise the pioneering innovation of their pilot.
• The Manchester pilot team has had their heads down carrying out research, working with seven additional centres around the country to review how multi-disciplinary teams (MDTs) make decisions about treatment across the country. They’ve also been talking to patients about how they want to receive information about their treatment options.
• In Gateshead, the pilot has started the one-stop-shop clinic so that patients have all their appointments coordinated into one day which has resulted in quicker decision making so that patients can start treatment as quickly as possible.
• Our Birmingham and Cambridge pilot teams have helped develop national guidelines for BRCA testing which highlight the best practice for carrying out biopsies to ensure they can be used for genetic testing so that patients can access personalised treatment.     
• In Aberdeen, the pilot team has joined forces with clinicians in Edinburgh to create a brand-new MDT to ensure patients based in the north of Scotland are accessing lifesaving treatment. 

What’s next?

The seven pilots will end in 2023, and then the teams will analyse their results. We’ll be asking them, ultimately has the pilot been a success? What has the impact been for patients? Is this a programme that should continue as normal practice? And should we be campaigning for the programme to be rolled out to other centres around the country? 

Whatever the results, we will be sharing everything our pilot teams have learned with Health Care Professionals around the country and creating a resource so that anyone who treats patients with ovarian cancer can access those learnings for years to come.

The IMPROVE UK pilots have created momentum and funded some amazing projects. But this is just the start of what we need to do. We will fund, we will campaign for, and we will champion the best treatment and care. We won’t stop until every woman in the UK has the same chance to survive her disease. Improve UK phase 2, watch this space!