"A step backwards."

I had previously left a positive review of Haemochromatosis care in NHS Lanarkshire when the introduction of nurse-lead venesection clinics meant that, after years of chaos with consultant-lead clinics, my condition was finally managed and maintained by staff who understood my circumstances, got to know me as a patient and were able to make agile responses to the differing needs of care as my condition progressed. Sadly, I’m now compelled to leave this review to say that the abandonment of this approach in favour of a return to consultant-lead care has made NHS Lanarkshire step back into the dark ages of Haemochromatosis care and condition management.

I used to get four venesections a year which had been the amount determined by the lead nurse as being necessary to stop me becoming symptomatic. It was beautifully simple, every three months I’d come in for a venesection, get bloods taken from this to monitor my levels and then book in again for another three months. I’m quite needle phobic and apparently have poor veins; however, the nurses at the clinic understood this and were able to deal with it no problem. Generally, every venesection was successful, and my quality of life was vastly improved.

Unfortunately, the nurse who managed this service left for another position out with NHS Lanarkshire and as far as I can see her role wasn’t replaced. The service has returned to consultant-lead and the chaos of 10 years ago is now creeping back.

I was put on a four monthly maintenance programme which reduced me to three venesections a year of a smaller volume of blood. I now need to attend to give a blood sample before venesections, I then must return for the venesection itself, so from four visits a year to the clinic I’m now up to six although the actual amount of treatment I receive is reduced. This would almost be acceptable if it wasn’t for the fact that I play Russian roulette each time I visit the clinic for treatment as on more than one occasion I’ve had an appointment for a full venesection only to be told the staff will only take samples from me. One of these incidents was after a failed treatment weeks previously – so it was OK to give me a venesection one day, it failed so I was asked to return, but it then wasn’t OK to complete the treatment without another sample?

I’ve also been told by a senior member of staff that there are no longer maintenance venesections carried out and I’ll be venesected after my consultants have reviewed blood results. That’s great, thanks for changing my treatment plan without telling me. I had a consultants appointment posted to me in November 2021… for July 2022! If this is the way, it’s going to go then I’ll be lucky if I’m still standing by that point.

Basically, I just feel that nobody cares anymore. If I’m symptomatic, so what? If my quality of life is greatly deteriorated, so what? The results on a bit of paper say that I shouldn’t be symptomatic, so it’s all good… that is if the clinic doesn’t lose my results, which has happened before.

“NHS Lanarkshire is committed to delivering world-leading, high quality innovative health and social care that is person-centered. We care about the people we serve, and our ambition is to be a quality-driven organisation that is focused on achieving a healthier life for all” according to the Corporate strategy on the NHS Lanarkshire website. I think some people in NHS Lanarkshire need to look up the meaning of person-centered, as I can tell you that as a patient, I’ve never felt so acutely that I’m just a number.