Woman in Sussex hospital for six months calls for ME treatment at home

WATCH: Karen Gordon speaks about her uncertain future with the condition

A woman from Sussex suffering from ME says she fears she will die unless health services do more to help her.

Karen Gordon from Polegate developed the condition after falling ill with a virus when she was 10-years-old.

Unable to bear the light and unable to feed herself, Karen has spent the last six months in the Conquest Hospital in Hastings.

The 37-year-old wants to return home with the same intravenous feeding she's currently receiving in hospital.

Doctors at the Conquest Hospital say that for Karen to return home on Total Parenteral Nutrition (TPN), she needs first to be assessed by specialists at St Mark's Hospital in London.

Karen's parents, Heather and Michael Gordon, say she's too weak to make the journey.

Heather says: "Karen's view and our view is that they could do it [TPN] remotely by keeping her at the Conquest Hospital, where she is now and St Mark's being in contact with Karen, us and the treating team.

"While the IV feeding is set up, I can be trained on how to put it up safely and use it at home."

WATCH: Heather Gordon wants remote feeding to be set up at their home for Karen

What is ME?

  • Myalgic Encephalomyelitis (ME) is also called chronic fatigue syndrome (CFS)

  • It is a long-term condition that can affect different parts of the body

What are the possible symptoms of ME?

  • Fatigue

  • Problems sleeping

  • Problems with thinking, memory and concentration

  • Muscle of joint pain

  • Headaches

  • Feeling dizzy or sick

  • Being sensitive to light, sound, touch, taste and smell

How severe can ME be?

According to the NHS, most cases of ME are mild or moderate, but 1 in 4 people have severe symptoms.

If you have very severe ME, you may have to spend all your time in bed resting and be fully dependent on carers. You may need be extremely sensitive to light and noise. You may be unable to swallow and need to be fed using a tube.

Karen Gordon developed ME when she was 10-years-old. Credit: Family handout

East Sussex NHS Trust say they are committed to doing the best they can for Karen.

A spokesperson for the NHS Trust said: "Our hospital and community staff are personally and professionally committed to doing the best they can for Karen, and have continued to work closely with her and her family to not only to provide treatment for her condition, but also to accommodate Karen’s wider care needs in relation to her ME and the impact that has on her day-to-day wellbeing.

"When patients become more unwell or have a rare condition, it is not uncommon for them to need specialist expertise to treat their condition that goes beyond that which is available in their local hospital - but which can be provided by a specialist NHS centre.

"We have been working with St Mark’s hospital, who have that very high level of specialist expertise as a national leader in their field, to arrange a course of treatment at St Mark’s that we believe can improve Karen’s condition, a course of treatment which we simply do not have the expertise to provide at our hospitals. We have also worked to ensure that her specific needs and wellbeing are accommodated as far as possible at St Mark’s.

"As we are now unable to provide any further care at our hospitals which would improve Karen’s condition, should Karen and her family choose not to take up the option of the referral to St Marks’, we will ensure that Karen is discharged home safely with an alternate programme of treatment that will allow her to be cared for in her own home."

Karen says she is desperate to return home to her parents, but exactly how that might happen remains unclear.

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