Neuro charities urge the NHS to get rehab right

On Monday 3 December we met with MPs and peers to share the impact of the pandemic on our communities ability to access rehabilitation services.

Earlier this year our community shared that they have struggled to access rehabilitation support as a result of the pandemic, and reported their symptoms got worse as a result.

In our survey, the community said:

  • 70% of physiotherapy appointments were cancelled
  • 57% of speech and language therapy appointments were cancelled
  • 55% of occupational therapy appointments were cancelled and 
  • 50% of mental health appointments were cancelled.

Many felt cancelled appointments contributed to their condition deteriorating. The most common symptoms that worsened were slowness of movement (39%) and stiffness (39%).

Joint meeting

We shared these results with other neurological charities (Neurological Alliance, MS Society, SUDEP Action, MND Association, Epilepsy Action, and UK Acquired Brain Injury Forum). We found their communities were experiencing similar issues, so we joined forces to host a joint meeting with five All-Party Parliamentary Groups to ask MPs and peers to take action. 

This was the first time these neuro All-Party Parliamentary Groups (Acquired Brain Injury, Epilepsy, Motor Neurone Disease, Multiple Sclerosis and Parkinson’s) had worked together to host a meeting. 

The meeting heard from experts and people with lived experience of the issues described. 

Georgina Carr from the Neurological Alliance set the scene, explaining the impact the pandemic on neurological rehabilitation services, using information from their Coronavirus (COVID-19) patient experience survey

Professor Adrian Williams from University Hospitals Birmingham NHS Foundation Trust explained why rehabilitation services are vital for the health and wellbeing of people with neurological conditions. 

Adine Adonis from the Association of Chartered Physiotherapists in Neurology outlined how the delivery of rehabilitation services has changed during the pandemic, the impact on patients, and the impact of 'long covid' on these services.

People with neuro conditions share their experience

The meeting then heard from people with lived experience of acquired brain injury. Phil Bungay, who lives with Parkinson’s and motor neurone disease shared:

“It was good to share my experience with politicians. During the pandemic my Parkinson’s nurse has been redeployed and she was the route into these rehab services. I’m lucky that my speech and language therapy has continued and moved online, but I’ve missed out on my neuro physio and I can really feel it.

“It was an interesting meeting and good to hear that politicians want to take action to ensure that people with neurological conditions get the support they need to stay well.” 

Simon Hoare MP, chair of the APPG for MS added:

“It is so important for politicians to hear about the reality facing people with neurological conditions who have been missing out on essential services. It is not easy listening, but shows that work needs to be done to change things for the better. It’s clearly a false economy not to provide neuro-rehabilitation services.  I now look forward to working with my colleagues across Parliament to help make sure these voices are heard, and action is taken to make that necessary change a reality.” 

Next steps

We plan to keep working with the other charities and APPGs to keep this issue on the agenda. In the New Year we’ll be asking parliamentarians to table questions, ask for a debate and raise concerns from our communities with the relevant minister.

If you have any experiences of not being able to access rehabilitation services do share them with us by emailing [email protected] or calling 020 7963 3915.

 

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