NHS PCD Service Specification

[Morrison10]

Could I ask if members of this forum are receiving the services specified, wherever they live. I’m 86, was diagnosed when 32, have never received any of the specified care and management, see page 9 of schedule 2, Services. Think this is particularly relevant to members who are having problems that may be linked to PCD.

[LD28 Administrator]

Hi, happy to set up a call about this with you. The Adult PCD service only started getting set up in 2019/2020, meaning the pandemic has delayed some aspects of it. It applies to the 4 specialist centres (although remote clinics will eventually be held in Birmingham). Happy to talk further.

Lucy

(Chair - PCD Support UK)

[Morrison10 in reply to LD28]

Morning Lucy, thanks for swift reply. I had bad night, but slept much later than usual, feel better for it! When I attended the family support annual meeting at Milton Keynes sat next to two staff from Royal Brompton, who were shocked that I’d never had physio etc. They said they made regular home visits. I’ve been patient at Queen Elizabeth, Birmingham since I was diagnosed with PCD at age 32. Three years ago didn’t think consultant was then seeing was helpful, so my daughter helped to look on line and paid to see details and interests of all respiratory consultants in area, found Dr Sullivan who is far better, and has been very helpful. Also went to Leicester to see Prof O’Callaghan, who confirmed at age 84 do have PCD!Yes pandemic has slowed progress, but we still need treatment. Had my jabs very quickly, well organised. However I’m having to pay for twice weekly physio at home, helping lot. There are other issues, such as getting results of sputum tests, that are usually available within 2-3 days, having to wait over week, then given wrong result! I’ve kept own antibiotics for many years, and have done 6 courses i.v at home with help from late husband. Need iv now, but surgery refuse to help. Know they are under great pressure, think though that need to recognise my needs. My mother lived to nearly 112, so have strong genes. I have telephone consultation with junior doctor on Monday, never seen her, and have to explain PCD etc. Haven’t seen my GP or spoken to her for over year. In her latest letter 8October to Group Surgery, Dr Sullivan asked for blood test, etc done by visiting district nurse. I’ve never had visit from District Nurse, had to go surgery for blood test, but apparently they didn’t do full one.

One of my difficulties is that as result of experimental grommet into left ear 25 years, that became blocked within hours but I had to wait 7 months for it to be taken out, by which time the nerve was dead, so can’t hear in that ear. Hearing declining in right ear, and aid not working properly, so having difficulties with hearing. I’ve asked several times for spare aid, but refused. Most people have 2 NHS aids, so don’t see why I can’t have reserve. Too risky for me to go to hearing clinic, held at big local doctors, so have had to ask for home visit, told this could be months before I’m seen.

Sorry to go on like this, I’m usually positive person, but all that’s happened lately is stressing me. Thanks very much for your help. Best regards, Jean

[Minehead123 in reply to Morrison10]

Dr Sullivan is my consultant and you could give herSecretary a ring. The Secretary always gets back to you with a reply. Good luck!

[Morrison10 in reply to Minehead123]

Yes spoke to Dr Sullivan yesterday, lovely lady x