Chief Exec Reflects

In our new blog post, below, our Chief Executive Georgina Carr reflects on her first month working at The Neurological Alliance.

What a difference a month makes

I have been in post for just over six weeks now, and it has been a fantastic whirlwind of listening, learning and very warm welcomes from across the sector. I have been struck by the sheer passion and level of commitment from all corners of the neurological community to improve neurological care, and how much opportunity there is to drive collective action. Although the neurological community is of course wonderfully diverse, there are so many shared challenges. So I wanted to provide a few reflections on these, below.

Data matters

Data is power. Or rather, accurate, correctly analysed data is power. Yet, for too many neurological conditions, particularly rare conditions, there just simply isn’t the data available to build a robust picture of prevalence or need or indeed spend on services. Of course, Neuro Numbers and our Patient Experience Survey are important parts of the picture here, but there are still many gaps elsewhere.

At the same time, there have never been such rich datasets for us to harness in order to drive service improvement and innovation. We co-chair the Neuro Intelligence Collaborative, an incredibly important initiative that seeks to better understand and utilise data within neurology. Together with members, I look forward to bringing together multiple sources of data to build an even richer picture of what works in neurological care. At the same time, I hope that we can drive improvements in the quality of data that is collected, and address the gaps that do exist in outpatient data, patient outcomes and spend.

Fit for the future

Many people I have spoken to have spoken of tremendous excitement, but also anxiety, about the future of neurology and neuro services. There is an exciting treatment pipeline for multiple neurological conditions, many of which have the potential to provide treatment options for people who currently have none.

But services are already struggling to meet current needs. Our patient experience survey showed that one in two people with neurological conditions experienced delays in accessing healthcare, and 29% had to wait more than year to see a neurologist. In fact, recent Association of British Neurologists data  showed that for every one neurologist in the UK, France and Germany have three. No wonder people are experiencing delays in accessing the right support.

We need to ensure there is appropriate investment and support so that people are able to access the right treatment and care at the right time. We need to learn and translate from all of the fantastic ways in which services are innovating, in order to make the most out of specialist expertise and ensure effective and efficient provision. That’s why we need NHS England to commit to a National Neurological Plan, which sets out how we will ensure services are fit for the future, better understand and scale up good practice, and truly put people affected by neurological conditions in control of their treatment, care and support.

Thinking beyond NHS care

Our NHS is a wonderful, vital asset. Of course. But too often, people are also experiencing significant problems in accessing the support they need beyond the NHS. We know that living with a neurological condition can cost up to £200 a week in extra costs. Yet, getting the financial support required, especially for those whose ability to work is restricted, is an exceptionally stressful, lengthy and often wholly inaccurate endeavour. I have spoken with so many members who have told me of the lengthy delays in accessing Personal Independence Payments (PIP) in particular, with many experiencing repeated assessments, repeated reviews of their case, and waiting a year or more for the right outcome.

Access to appropriate social care is near impossible, and is too often dictated by a person’s financial circumstances, rather than the support required. And we know that demand is increasing, but Government spend isn’t keeping up. In real terms (ie, adjusting for inflation), total expenditure is still £300 million below the level it was in 2010/11, despite increasing demand for services.

The value of the right social care, of the right financial support, to enable people with neurological conditions to live an independent life cannot be understated. The UK Government has committed to bringing forward proposals on both social care and disability benefits – these can’t come soon enough. We are committed to working with those who also want to see urgent reform, so that people can get the support they critically need.

Thank you

I would like to say a huge thank you to everyone who has supported my first few weeks at the Alliance. I’ve learnt an awful lot already, and am still making my way through induction meetings, still listening and learning about issues I’ve covered here, as well as those I haven’t. I look forward to working with you in continuing to collectively call for much needed improvements to neurological treatment, care and support. My door is always open – please don’t hesitate to get in touch.– Georgina Carr, Chief Executive