'Don't let treatment be a postcode lottery' urge North West Long Covid patients 


Amanda Kitson was a long distance runner, and a busy working nurse. 

Now she has days where she can struggle to climb the stairs. 

Since Spring 2020 Amanda, like many thousands of other people across the UK, has been dealing with a huge range of symptoms described under the term "Long Covid".

These can include debilitating fatigue, chest pains, joint pains, and 'brain fog' - which involves memory problems and an inability to focus.

It has meant Amanda has been unable to work for the best part of a year. 

I'm a year in now and not sure I'll ever get back to the pre-Covid me, and that's sad because I'm also a nurse - nursing's something I've done for 30 years, it's part of who I am, and I want to be back, I want to be back at work helping my colleagues, standing side by side and dealing with the pandemic. 

Amanda Kitson, Long Covid patient

She added that she and her husband are trying to shield her children from the scariest moments of her illness - because it is having an effect on the whole family. 

Amanda is one of three woman who have shared what it's like to live with Long Covid with Granada Reports. 

All three have pursued different careers in healthcare -  but now they share the same condition, and an overwhelming list of symptoms:


WHAT IS LONG COVID?

Around one in five people with coronavirus may go on to experience Long Covid, according to data from the Office of National statistics.

People have reported a huge range of different symptoms including severe fatigue, chest paints, joint pains, migraines, problems with digestion, brain fog, confusion, and a loss of taste or smell. 

Long Covid has left the NHS fighting on two fronts - Trusts across the country saw acute hospital admissions peak in January, but the battle not always over when people leave the wards. 

Many have become seriously ill with Long Covid, even if they had a very mild case of the acute coronavirus infection. 

1 in 5

Have symptoms lasting at least five weeks

1 in 10

Have symptoms lasting longer than 12 weeks


Because it is a relatively new condition, medical experts and scientists agree there are a lot of unknowns about Long Covid. 

Dr Sarah Sibley, who is a Respiratory Consultant, leads the Cheshire and Merseyside Strategic Clinical Network for respiratory. 

She says the NHS is "constantly learning and adapting to try to meet the needs of patients". 

"Covid is a significant illness for a lot of people, and it often takes longer for people to recover than they expect, so it's quite normal that people will still have symptoms for the first six weeks"

But by 12 weeks people should be pretty much back to normal. If not, people should see their GP, who will arrange the right investigations and refer them on to their Long Covid service. 

Dr Sarah Sibley

WHAT HELP IS OUT THERE?

The NHS has launched a Covid-19 rehab service for people who have been suffering with the long-term effects of the virus, with the Your Covid Recovery Service initially launching online. 

£10 million has also been invested in a network of Long Covid clinics - with nine operating in the North West so far. 

The aim of the new centres is to bring together doctors, nurses, physiotherapists and occupational therapists to offer both physical and psychological assessments and refer patients to the right treatment and rehabilitation services.


'DON'T LET THIS BE A POSTCODE LOTTERY'

ITV News has heard from patients who say actually accessing help can be 'hit and miss'. 

Dr Clare Rayner, who has had long Covid since March 2020, is an occupational health specialist and has sat on a task force with NHS England to advise on these services. 

She says they are in danger of being "the Emperor's New Clothes" - saying some are "there, but not functioning as they should be". 

That is something Dr Jenny Ceolta-Smith is familiar with. 

She says her GP did their best for her, but together they kept coming up against barriers in her care pathway. 

"I have been told so far that the Long Covid clinic at the hospital was only going to see people who have had respiratory problems. That excludes me. It doesn't offer the things I might need, the full multi disciplinary team, the consultants, the nurses, the occupational therapists.  and physiotherapists "My message to the government would be - please don't let this be a postcode lottery.

Dr Jenny Ceolta-Smith

NHS England has provided £10 million for the network of clinics

An NHS spokesperson said: “We expect that there will need to be a substantial further expansion in support for long Covid patients during 2021. Covid and its long-term consequences are entirely new, but – through our network of clinics – the NHS is carrying out research and sharing learning about how best to treat and rehabilitate patients experiencing ongoing debilitating symptoms.”


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