Haemochromatosis patients in Lanarkshire resort to private treatment

Frank Craig, 70 and his friend Paul Hagan are among the estimated one in 113 Scots who have the incurable and inherited condition, which results in the body storing too much iron.

Left untreated it can cause life-threatening complications including liver cirrhosis, liver cancer, diabetes and heart failure.

Mr Craig's brother died as a result of the condition, which is dubbed the 'Celtic Curse' because it commonly affects Scots, Irish and Welsh people.

Treatment of Haemochromatosis is simply aimed at removing iron from the body and this is generally done by regular bleeding known as phlebotomy.

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Once iron levels have stabilised, NHS guidelines recommend that the procedure, also known as venesection, is carried out every six to 12 weeks if the condition is under control but more frequently if it is not. 

Patients will generally start to feel unwell if levels become too high.

READ MORE: Scots Haemochromatosis patients hit by delays for treatment 

Mr Craig, who lives in Larkhall and owns an electrical goods shop, was diagnosed with the condition ten years ago. He has not been seen by his consultant at Wishaw General Hospital since before the pandemic. 

The pair have been paying a private nurse for private phlebotomy treatment, which costs £120 per session, alternating between their homes.

Mr Hagan, who also owns a business, said he was aware that many patients might not be able to afford the cost of private treatment.

Their nurse agreed to lower the treatment price to £40 if he could find eight other patients.

He put an advert on social media and received 68 replies from Larkhall alone, many of whom have not been seen since before the pandemic.

Mr Hagan, who was diagnosed 15 years ago, said: "The doctor who was an expert in the field at the time said I would be seen every three to four months and told me not to miss any appointments. What did they do? They left me.

"Myself and Frank just decided to take it into our own hands and we got a private phlebotomist to come out to see us.

"We can afford this but lots of people can't and these are the people I feel sorry for. You actually feel quite ill when the levels are up.

"Anything you read about the condition will say that once levels reach the 800/900 mark, damage is being done to your organs.

"It's niggling away, bit by bit."

The charity Haemochromatosis UK said it was concerned about the volume of complaints it had received from patients in Lanarkshire.

A letter from the charity seen by The Herald addressed to managers at Wishaw General Hospital expresses concern that "venesection is being withheld from patients" unless levels of serum ferritin (a protein that stores iron) are in excess of 1000 ug/l.

The charity's Chief Executive Neil McClements writes: "This level is not consistent with established clinical guidance and appears to be an arbitrary level, set for administrative reasons.

"As a consequence, this policy is adversely affecting patient welfare and may lead to unnecessary and avoidable adverse clinical events.

The letter, dated April 21, adds: "This is your responsibility to resolve and unless rectified may lead to further action, including litigation for clinical negligence."

The health board is asked to provide an update within 28 days.

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Mr Craig's daughter Lauren said her father started to feel poorly at the start of the pandemic but was told there were no clinics running in Lanarkshire at that time, as many services ground to a halt across the NHS.

She said: "This continued from 2020 to 2021. They said there would be a clinic [that year] in July but he's never been invited to one.

"He requested that his bloods were taken and his (serum ferritin) levels were up to about the 800/900 mark.

"He was quite alarmed that his levels had risen so high and asked to be referred to his consultant.

"He was advised there had been a change in the recommendations and if your levels were under 1000 it was fine and you can go about your business.

"This has been their position since 2020."

She said one of her brothers has also been diagnosed with the condition.

She added: "[My father] should be getting regular scans to check his internal organs."

READ MORE: Collapse of one of Scotland's largest GP practices 'worrying' 

Hemochromatosis symptoms usually start between the ages of 30 and 60.

They include; weight loss, feeling very tired all the time, joint pain, mood swings and depression and brain fog.

Mr Craig's wife wrote to former First Minister Nicola Sturgeon and the then Health Secretary Humza Yousaf in 2021 but was advised to speak to his consultant.

"To me it just feels like mismanagement and quite neglectful care," said his daughter.

Veronica Rainey, Associate Medical Director, South Lanarkshire Health & Social Care Partnership, said: “Due to patient confidentiality, we cannot discuss individual cases.

"However, patients attend the phlebotomy service based on clinical decisions that consider each patient’s specific condition and needs.”