Scots Haemochromatosis patients facing treatment delays

Patients generally require a maintenance treatment known as phlebotomy or venesection which is similar to giving blood and helps reduce the amount of iron in the body.

NHS guidelines recommend that the procedure is carried out every six to 12 weeks if the condition is under control but more frequently if it is not. 

Hundreds of people are said to be waiting for treatment as a result of NHS Greater Glasgow and Clyde closing a service at Stobhill Hospital during the pandemic.

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Patients say there was a complete lack of communication, many were not told that the day unit was closing and tried unsuccessfully to book routine treatments, which they say are essential in order to stay well.

One woman, who says she was not seen throughout the pandemic, says she had to call a liver specialist because she was suffering symptoms of iron overload including tiredness and sore joints. 

Her levels of ferritin -  a protein that stores iron - were 400. Anything greater than 200 in women is considered abnormal.

NHS Greater Glasgow and Clyde apologised to patients who were affected by the closure and said it continued to treat "those most in need" of the service.

Kevin Kane, from Glasgow, says he was receiving treatment every couple of months pre-Covid but has not been seen since before the pandemic.He says he resorted to private treatment at a cost of £240 and was advised by his GP to register a complaint.

He said: "We have always been told that the NHS is open for business. If it was right to be venesected every two months before the pandemic then it is right to be venesected every two months during the pandemic.

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"If you allow the iron to build up, that's when you become symptomatic. 

"What they were saying was if you become symptomatic phone your doctor but that's not the point. I have a diagnosed condition - you don't wait till your liver packs in then go to your doctor.

"This was a capacity driven decision. It became apparent that some seriously ill patients had been referred to other hospitals.

"I've given blood three times privately to a mobile phlebotomist - I'm not going to sit around until I'm symptomatic.

"It's also a bit of a rigamarole to give blood on the blood transfusion service, it's not just as simple as turning up."

Haemochromatosis is known as the "Celtic curse" in Ireland although it is common throughout northern Europe. The condition can cause a number of unpleasant side-effects including tiredness and chronic pain.

Two major, recent studies revealed the condition quadruples the risk of liver disease and doubles the risk of arthritis and frailty in older age groups.

In order to release the iron around a pint of blood is withdrawn. For some people this can mean attending hospital several times a year until the iron levels are reduced.

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Mr Kane was diagnosed with the condition when five years ago after 18 months of GP visits and says it is often often diagnosed during a post mortem. Liver tests showed his ferritin levels had reached 1000 and a genetic test confirmed it was Haemochromatosis. 

He said: "The Australian motto for the condition is - difficult to diagnose, easy to treat and tragic to ignore. Many peoples' symptoms are treated without the root cause not diagnosed or mis-diagnosed."

Mr Kane said he finally received an appointment this week, for the procedure at Glasgow Royal Infirmary but was later told this was being cancelled due to Stobhill's unit re-opening.

He said: "Patients like myself were told for months that treatment was based on clinical need but that wasn't the case - the unit was closed.

"They hatcheted the whole department and didn't tell us. Some people will still be unaware or will have iron levels that are to their detriment and when they do get treatment will have to be 'ironed out' more aggressively."

Another patient, who is a nurse, said: "It's been a diabolical service. I'm a nurse and know what to do to access services but God knows how it is for others."

A spokesman for NHS Greater Glasgow and Clyde said: "Throughout the pandemic, wherever possible we have tried to maintain services, however, as per national guidance during the first wave, elective and non-urgent procedures were postponed where ever appropriate. 

"This impacted the venesection service at Stobhill and we apologise to any patients who were affected.

"However, while the day unit temporary closed as staff were redeployed to other wards, patients were still able to receive venesection based on clinical priority and decisions were taken on a case-to-case basis. Although the day unit was closed other clinical areas were available and ensured we were able to continue treating those most in need of the service. 

"We can confirm the day unit reopened as soon as was possible in August 2021 and is currently operating three days per week, treating 24-30 patients per week. 

"Additionally, Glasgow Royal Infirmary’s Gastro day unit – which reopened in January 2021 - sees an additional 40 patients per week for venesection. 

"The current waiting time between venesection is between four and five weeks and patients are prioritised based on their individual needs."