A brave child has to endure long periods of illness and hospitalization because an important service has run out of money.
Angus Evetts, three, used to be regularly tested at a specialist lung clinic to detect lung infections before they developed. But now he has to get sick to be treated.
This means that he will not receive oral antibiotics to combat the bacteria, but will have to stay in the hospital for two weeks, where he will receive the medication intravenously, because he is much sicker.
Mother Amy said: “In December we received a letter asking for feedback on the service as funding was running out.
“We didn’t know it had stopped until we got to the hospital and spoke to the specialists, who were all angry about it.
“Of course I worry about my own child, but there are 700 children with various respiratory diseases who are affected by this.”
Angus has primary ciliary dyskinesia (PCD), a rare genetic condition that affects only one in 20,000 people. It affects multiple organs and gets worse over time.
Angus Evetts (right), whose health has been affected by cuts to NHS Lothian.
Until March, Angus attended the ComRRI (Complex Respiratory and Respiratory Infection) service, a specialist team at the Royal Hospital for Children and Young People in Edinburgh.
The service was so helpful to the little boy that he, Amy, 32, and dad Mark, 36, moved from Dundee to Queensferry with his big brother Ruaraidh, 5, to be closer.
Amy said the service provided was “phenomenal” and made a huge difference to Angus’ life.
Before NHS Lothian stopped providing services, Angus was seen four times a year by the pulmonologist, physiotherapist, nurse specialist and ENT specialist.
Some swabs were taken from him to check for bacterial growth so that antibiotics could be started before he became ill.
Angus Evetts (right), whose health (he has a genetic respiratory condition, PCD) has been affected by cuts to the NHS Lothian. Also pictured are mother Amy and brother Ruaraidh, 5.
The team could also administer intravenous antibiotics in the community and train parents to administer intravenous administrations at home. Angus is on long-term, year-round antibiotics and his parents have to do physical therapy up to four times a day if he is unwell. He has to use a nebulizer up to twice a day if he is ill.
At clinic appointments Angus saw his physiotherapist and his specialist and a comprehensive multidisciplinary team meeting was held before it was determined what action needed to be taken.
But now Angus only sees his specialist, who has not been able to see any smears or receive advice from other healthcare professionals.
Angus Evetts (right), whose health (he has a genetic respiratory condition, PCD) has been affected by cuts to NHS Lothian. Also pictured is brother Ruaraidh (left), 5.
Amy added: “We were originally going to be trained in how to administer intravenous antibiotics at home, but the closure of the service means there is no longer any funding for that purpose. So if Angus needs intravenous antibiotics, we have
no choice but to be in hospital. Ruaraidh has asthma, but his appointments at the asthma clinic are now more extensive than Angus’s.
“And there is a complete
inequality in children with cystic fibrosis. The treatment plan is the same for both PCD and CF, but cystic fibrosis patients have a special clinic.”
Join the Daily Record WhatsApp community!
Get the latest news delivered straight to your messages by joining our WhatsApp community today.
Receive daily updates on the latest news and headlines from across Scotland.
No one can see who has signed up and no one can send messages except the Daily Record team.
All you have to do is click here if you are on mobileSelect ‘Join Community’ and you’re in!
If you are using a desktop, simply scan the QR code above with your phone and click ‘Join Community’.
We also treat our community members to special offers, promotions and advertisements from us and our partners. If you don’t like our community, you can check out at any time.
To leave our community, click on the name at the top of your screen and choose ‘leave group’.
If you are curious, you can read our privacy statement.
Scottish Lib Dem leader Alex Cole-Hamilton said: “Although this condition is very rare, it is no less deserving of all the help the NHS has to offer.
“If it were more widespread, like cystic fibrosis, and services were curtailed in this way, the country would rightly revolt.”
NHS Lothian’s own consultants have argued for the service to continue, producing a cost estimate in a report showing the service would save £344,868 a year.
Allister Short of the Health Council stressed that ComRRI had only been a pilot project with external funding for two years.
He said: “Due to the financial challenges we currently face, NHS Lothian is currently unable to fund an extension of the service beyond the pilot.
“We are working closely with clinicians to explore alternative care options and the pilot evaluation will be used to inform these discussions.”
Don’t miss the latest news from Scotland and beyond – sign up for our daily newsletter here.
