Chief Executive Louise Fish joins the AMRC at Downing Street


On Tuesday 27 November, I joined the Association of Medical Research Charities (AMRC) Day in Westminster asking ministers to make sure that the UK’s new relationship with the EU has no negative impact on patients and medical research in the UK.

Last year, the AMRC’s members invested over £1.6 billion in medical research in the UK, funded the salaries of over 17,000 researchers in the UK, and recruited over 200,000 people into over 1,300 charity-funded clinical studies or trials.  The TSA is proud of our contribution to UK research as we invest in TSC-related medical research.

In the morning, I was part of a delegation of four Chief Executives who met Tamsin Berry, Deputy Director of the Office for Life Sciences (OLS).  The OLS champions research, innovation and the use of technology to transform health and care service, and it is part of the Department of Health and Social Care and the Department for Business, Energy and Industrial Strategy.  We talked to Tamsin about why medical research charities matter and using patient data in research to save and improve lives.

At lunchtime I attended a reception to launch the AMRC’s new report on Saving Lives with Patient Data Registries.  The report provides an insight into the benefits that charity-supported patient registries can deliver for patients and medical research.  The report will be incredibly helpful as we look to establish a UK TSC Registry as part of the TSA’s new five year strategy.

In the afternoon, I joined a delegation of four AMRC representatives who met Lord Callanan, Minister of State for Exiting the European Union at 9 Downing Street.  During the meeting we emphasised that there must be no disruption in patient access to new and existing medicines and medical devices from day one of the UK’s new relationship with the EU.  We also talked with Lord Callanan about the need for an environment that enables collaborative research across the UK and EU to maximise the benefits for patients. 

It was fantastic to have an opportunity through the AMRC’s Day in Westminster to represent the views of people living with TSC and their families at the heart of Government.  And the only downside of the day was the pouring rain, which meant that I didn’t have a chance to meet Larry the famous Downing Street cat!