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Losing such a vital service

Posted By volansrc46

"Losing such a vital service"

About: Royal Hospital for Children and Young People (Edinburgh) / Paediatrics

(as a parent/guardian),

I am shocked and angered to hear that the specialist complex respiratory and respiratory infection team (ComRI) service will not be continuing.

As a parent of a child with PCD (Primary Ciliary Dyskinesia) who relies heavily on this service, I feel it's an absolute disgrace that it will no longer be available. As a result, there will no longer be specialist MDT meetings to review cases, the surveillance swabs are being stopped, appointments will no longer have physio, specialist nurses and consultants at them and there will be no community access to IV antibiotics. This is likely to significantly affect the quality of care that my son and hundreds of other children receive.

It also means that we are likely to end up admitted more frequently for 2 weeks of IV antibiotics, as is the protocol for treating his exacerbations, as we will not be able to pick up on bacterial growths before they become problematic due to the cancellation of surveillance swabs. This is likely to be the case for many other families and is likely to cost the NHS more in the long run due to the cost of lengthy admissions. 

I feel it is wholly unacceptable that children with chronic lung conditions are losing such a vital service, potentially with long-term implications for their health. 

I cannot speak more highly of the team and cannot understand why they are being left in a position where they will have to compromise patient care. I would be interested to know the rationale behind these cuts and what service is going to be introduced instead to make sure that our children have their needs met and that they receive the treatment they deserve. 

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Responses

Response from Claire Withnell, Patient Experience Officer, Patient Experience Team, NHS Lothian last week
Claire Withnell
Patient Experience Officer, Patient Experience Team,
NHS Lothian

Submitted on 08/05/2024 at 15:47
Published on Care Opinion at 15:47

picture of Claire Withnell

Dear volansrc46,

Thank you for providing your feedback on Care Opinion with us, regarding the future of the specialist complex respiratory and respiratory infection team (ComRI) service within NHS Lothian. I am glad that you felt that this team have made such a positive impact on the care your child has received.

I am very sorry that you have now had to raise the issue of the service closure and the implications this may have on your child’s condition. Please be assured that I have reached out to the Senior Management team involved and they are seeking to get up-to-date information on this service. A follow up response will be posted in due course.

However, If you would like to raise a complaint in relation to the care and treatment for your child please contact the Patient Experience Team on 0131 536 3370 (Mon-Fri, 9am-2pm) or by email on LOTH.Feedback@nhs.scot

Kind regards,

Claire

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Response from Claire Withnell, Patient Experience Officer, Patient Experience Team, NHS Lothian last week
Claire Withnell
Patient Experience Officer, Patient Experience Team,
NHS Lothian

Submitted on 09/05/2024 at 10:15
Published on Care Opinion at 10:15

picture of Claire Withnell

Posted on behalf of Grainne Dowds, Service Manager, Royal Hospital for Children and Young People.

Dear volansrc46,

The complex respiratory and respiratory infection team (ComRRI) service was started as a pilot scheme in 2022 through access to external funding for 2 years. Unfortunately, while the service made advances in the development of streamlined pathways, catering to the bespoke needs of the affected patient cohort, the significant financial challenges being faced by the NHS means that there is currently no additional funding available to continue the service at this time. This is one of many difficult decisions the service is facing at this time.

However, significant learning has been taken from the pilot and we are pleased to hear that the work undertaken has been of such value to your family. We are constantly reviewing our services and should there be potential to restart the ComRRI service in the near future, the benefits it has delivered for patients means that it is high on our list of priorities.

Best wishes,

Grainne Dowds

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Update posted by volansrc46 (a parent/guardian)

Dear Grainne,

Whilst I appreciate the financial difficulties facing the NHS, it is completely unacceptable that my child, along with hundreds of others will receive a sub standard service as a result. The service is called 'complex' for a reason. The battles our children have to go through every day to keep their lungs as healthy as possible, including nebulisers, prophylactic antibiotics, airway clearance therapy multiple times a day, nasal rinsing, missing social events, school and nursery when sick and regular admissions to hospital for IV antibiotics is relentless and something that no child should have to go through. By removing this service, you are adding to the battles as you are limiting their access to monitoring and management of their condition and allowing their lung health to deteriorate unnecessarily.

Since November 2023 alone, my son has spent 5 weeks in hospital across multiple admissions. He has had a bronchoscopy, a gastrostomy and a BAL as well as 4 weeks of IV antibiotics and multiple courses of oral antibiotics. He has grown streptococcus pneumoniae, haemophilus influenzae, staphylococcus, serratia and moraxella, with his most recent growth of serratia being a resistant strain requiring a particularly potent dose of IV antibiotics.

I am under no disillusion about the cost that all of this treatment has had to the NHS. The harsh reality of it all, is that these admissions will continue to become more frequent as these growths will not be picked up through routine swabbing and will only be picked up when my son becomes symptomatic to the point of needing admitted. I was meant to be getting trained to administer his IVs in the community as he has a portacath but the removal of the funding has meant that there is now no way of me getting trained up, so we will have no choice but to be in hospital each time he needs IVs. Surely this is not a cost effective service.

I look forward to hearing your justification about which services are being kept and why they are deemed more important than this one.

Response from Claire Withnell, Patient Experience Officer, Patient Experience Team, NHS Lothian last week
Claire Withnell
Patient Experience Officer, Patient Experience Team,
NHS Lothian

Submitted on 10/05/2024 at 10:59
Published on Care Opinion at 10:59

picture of Claire Withnell

Dear volansrc46,

Thank you for replying to Grainne’s response regarding the ComRRI service. I am sorry to read of the multiple admissions your son has required due to his PCD, but can also hear the positive impact that this service has had for your son and yourself during the pilot scheme.

At this point, can I invite you to contact the Patient Experience Team (PET) to raise your concern, then we can ensure that your experience is fully investigated, and that a response can be issued to you addressing all your concerns. We can be contacted on 0131 536 3370 (Mon-Fri, 9am to 2pm) or LOTH.Feedback@nhs.scot.

I am sorry to signpost you on but as Care Opinion is an anonymous platform this will allow us to directly respond to the concerns you have going forward for your son.

Kind regards,

Claire

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