New evidence of ‘unmet needs’ of people with neurological conditions as the UK’s seedling brain injury strategy is finally sown. 

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New evidence of ‘unmet needs’ of people with neurological conditions as the UK’s seedling brain injury strategy is finally sown. 

 

 

   Mental health and care needs not being met ...    

NeuroLifeNow evidence

 

   … much work to do in the New Year   

UK Acquired Brain Injury Forum (UKABIF).

 

The Government’s recent go ahead for a national acquired brain injury strategy comes as new findings show the struggle of people with neurological disorders is continuing unabated.

Just days ago, brain injury communities in England and Wales united in welcoming the Government’s decision to put in place a cross-departmental strategy for acquiredbrain injury (ABI).

The move negated the need for the ABI Bill, which was sponsored by Chair of the All-Party Parliamentary Group on Acquired Brain InjuryRhondda MP Chris Bryant, and was due to have its second reading in the Commons last week.

Along with Minister of State for Care and Mental Health, Gillian Keegan, Chris has now been appointed as co-chair of a new panel made up of officials from several departments whose remit is to devise a national neurorehabilitation strategy, starting in early 2022.

And it is a strategy that is long overdue.

Chloe Hayward, Executive Director of the UK’s Acquired Brain Injury Forum (UKABIF)which helped to drive the ABI Bill, said it was “hugely welcome news.”

She added, “It has been a real collective effort from charities including The Child Brain Injury Trust, The Children’s Trust, The Disabilities Trust and Headway, supporters, service users and MPs, and it is wonderful to see that collaboration pay off.

But, she cautionedThere is much work to do in the New Year as the ABI strategy is implemented.”

 

Snapshots

Almost 200 people with 59 different neurological conditions and symptoms gave details of their experiences in the latest two-month update from NeuroLifeNownational research and support project being co-ordinated by the Brain and Spine Foundation and The Neurological Alliance.

The data is being shared with NHS England, NHS Improvement commissioners and teams, neurological specialists, and local care providers to help secure improvements in neurorehabilitation provision.

So, what picture might the new ABI panel paint from the latest NeuroLifeNowsnapshots of life for people with neurological disorders?

 

   I […] was diagnosed with Functional Neurological Disorder (FND) two years ago and have had to fight for what little help I've received. I'm waiting on rehabilitation. I'm in pain constantly…I'm just so fed up of it all.   

NeuroLifeNow participant

 

Here are some of the other findings:

 

  • Nearly a quarter reported delays to care.
  • More than 4 in 10 said their mental health needs were being met to a small extent or not at all. 
  • A quarter rated their GP’s appointment as unhelpful. 
  • 11 per cent said their experience of care was poor or very poor.

 

In their latest update to NeuroLifeNow research participants, Marc Smith, CEO of the Brain and Spine Foundation, and Georgina Carr, CEO Neurological Alliance (England), also acknowledged “the very real disruption” of some services.

“We are still very concerned about waiting times for neurology or neurosurgery appointments and we are continuing to track the rate of increase,” they said.

But they assured participants that their voices had been heard “at the very highest levels of the NHS” and would help to influence decisions, adding:

 

   The reality of living with a neurological condition that you shared […] provides further illustration of unmet needs.   

 

Among the more encouraging findings:

 

  • 80 per cent of medical appointments were helpful
  • Nearly 60 per cent of patients had a face-to-face appointment (despite the pandemic) 

 

The NeuroLifeNow team are currently seeking support with the design development of their app. [1]

And the Brain and Spine Foundation has also set up new forums for ‘neuro creatives’, ‘neuro changemakers’ and ‘neuro carers’ to help support people living with neurological conditions and their families and carers.

More information on the charity’s website here: https://www.brainandspine.org.uk/

 

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References

  1. NeuroLifeNow

Further reading

NeuroLifeNow update: fresh proof of OT impact on living with neurological disorders

NeuroLifeNow reveals lived experiences of neurorehabilitation during the covid pandemic

Brain and Spine Foundation, CEO on NeuroLifeNow app

Back the Acquired Brain Injury Bill: braininjuryblogger Michelle Munt’s appealtoall MPs

A brain injury survivor’s open letter to MPs: Back the ABI Bill!

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