'Please don't abandon our long Covid support'

Long Covid patients using a specialist service have said they feel abandoned after being told it will end in March.

NHS Cheshire and Merseyside said the hubs, which were set up at the height of the pandemic in 2020, were no longer viable financially and demand for the service was falling.

Cheshire and Merseyside Integrated Care Board (CMICB) has advised patients in the area to access other services while a review is carried out.

However, the service users said that was not realistic as they need access to many different specialist treatments.

In September 2021, Barbara Cunningham caught Covid.

She said life had never been the same since.

"It impacts every single part of your life," she said.

"The sleeping, pain, being able to walk, being able to talk, being able to eat, swallow."

The 53-year-old is one of an estimated 1.9 million people in England with long Covid, a complex condition with wide-ranging symptoms from breathlessness and muscle pain to brain fog and extreme fatigue.

She had to give up her job as an NHS administrator and said she struggles with any physical activity and gets headaches looking at screens and books.

"Some days you just sit in a corner looking at all of the things you used to do and feeling like you've lost all of that and not knowing whether you'll ever get any of that back," she said.

The hubs function as a one-stop shop which offer services from physiotherapy to mindfulness and support groups and can also directly refer patients for other specialist help such as counselling.

Barbara said the service transformed her life.

"They helped me learn how to breathe again," she said.

"They got the referrals in to cardiac rehab, speech and language, mental health.

"It's lovely to be surrounded by people who completely understand how you feel because they're going through the same journey."

About 1,000 people who use the hubs have been advised to access a range of separate services treating individual symptoms while a review is carried out.

CMICB has pointed patients towards existing groups including support for chronic fatigue, pain management services, occupational therapy and rehabilitation services.

Samantha Griffiths, 55, also uses the hubs.

She said the idea that patients would be able to access and organise help from numerous different services was unrealistic.

"The things they've mentioned, it's nothing new and they haven't worked for us," she said.

"The pain management clinic, for example, [is] already completely oversubscribed."

Karen Paddock, 62, is another former NHS worker who had to give up her job.

She said brain fog and chronic fatigue made it particularly difficult for long Covid patients to navigate the system.

"People will just give up," she said.

As well as unhappiness at the announcement, some campaigners have questioned the timing of the review.

Legally, the organisations which fund NHS care have to consult or engage with patients before significantly changing a service and early on in the process.

Cheshire and Merseyside's review of the hubs was announced at the same time as their closures and it will not report back until after they are gone.

The BBC asked Leon Glenister, a barrister specialising in NHS cases, to look at the website announcement.

While unable to give legal advice without studying the background to the decision, he stressed that in order to be lawful, "any engagement has to be prior to changes in the delivery of the service".

"What's the point in consulting when a decision's already been taken?" he said.

"That's why here it's odd that a decision seems to have been taken on closure before any engagement has been conducted through the review.

"So I can see why patients say it's a fait accompli."

The campaigners in Cheshire have been backed by the national charity Long Covid Support which said services around the country were under threat.

The charity's representative Margaret O'Hara said they felt they were being pushed out to the margins by many integrated care board (ICB) funding organisations.

"Just because it's not convenient for the ICB or it's too expensive for the ICB, it doesn't mean we have ceased to exist," she said.

"We're still here, we still need healthcare."

CMICB said it was "undertaking extensive engagement as part of our review", whcih included working with "people who are currently accessing care, local long Covid support groups and wider community groups".

"Anyone who wishes to share their views and experiences is strongly encouraged to do so by responding to our questionnaire," it said.

"We understand that these changes are causing concern – especially to those using current long Covid hub services locally.

"All patients who are currently under the care of a long Covid service are being contacted to let them know what will happen next and how they will continue to be supported."

The review ends on 12 March.

Listen to the best of BBC Radio Merseyside on BBC Sounds and follow BBC Merseyside on Facebook, X and Instagram and watch BBC North West Tonight on BBC iPlayer.