BBC coverage of NHS Continuing Healthcare: Mother stays awake for 60 hours as son’s care breaks down

Posted on: August 8th, 2023 by Amy

Image: Family photo shared via the BBC

On Monday 7 August the BBC ran a multi-platform news story regarding NHS Continuing Healthcare, which as experts in CHC Beacon was asked to contribute to.

Through a long-form web article and additional radio and television coverage including the Today programme, BBC Breakfast and BBC News at Six the report emphasised that despite recent significant increases in spending on Continuing Healthcare, staff shortages and rising prices have meant that families of people with complex medical needs are lacking the help they need, warning that the NHS system that funds their care at home is struggling to provide sufficient support.

The coverage followed 24-year-old Declan and his mother Alex. Declan has a severe and progressive muscle wastage condition known as Duchenne Muscular Dystrophy and is unable to move unassisted. He requires a ventilator to breathe and lives with chronic heart and respiratory failure.

Declan is entitled to round-the-clock care at home through NHS Continuing Healthcare, however the repeated breakdown of this vital support has left his mother Alex having to provide it by herself, day and night.

Speaking to the BBC, Managing Director of Beacon Dan Harbour said the national CHC advice line provided by Beacon has seen a sharp rise in calls from families “who sound incredibly desperate, upset, stressed, exhausted, because the care package isn’t working for them, and [they] are struggling to get anybody to listen to them”.

He said when it comes to commissioning and managing Continuing Healthcare for patients “there are pockets of really good practice and pockets of quite appalling practice in [different] parts of the country”, but currently the Continuing Healthcare scheme is “in a perfect storm of financial constraints and significant recruitment challenges.”

Read more about the story using the links above, or by searching ‘Continuing Healthcare’ on the BBC.

If you would like to share your thoughts or experiences regarding the above article, Tweet us @BeaconCHC.


If you are feeling overwhelmed by NHS Continuing Healthcare, click here to explore our free online resources including our downloadable Navigational Toolkit and online FAQs. You can contact our Information and Advice Service on 0345 548 0300 to book a consultation of up to 90 minutes of free advice with a specialist adviser.

Beacon also provides honestly-priced casework and representation services at all stages of the CHC process which keep the needs and wishes of the individual at the centre. Click here to find out more about our casework and representation services, email or call 0345 548 0300 and select option 2. Please let us know if there are any important dates we should be aware of.

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