"Unsure what the way forward is"

About: General practices in Ayrshire & Arran General practices in Ayrshire & Arran NHS 24 / NHS 24 (111 service) NHS 24 NHS 24 (111 service) Scottish Ambulance Service / Emergency Ambulance Scottish Ambulance Service Emergency Ambulance EH12 9EB

Posted by Flo831 (as a parent/guardian), 5 years ago

My daughter currently suffers from sphincter of Oddi dysfunction and has episodes where the spasms become unbearable and uncontrollable. Our family GP has been v supportive but are unable to help during these episodes. We have found she responds very well to entonox and can mobilise to the ambulance, allowing transport to A&E for treatment. Yesterday found me in tears of despair trying to get an ambulance for this, despite also calling our GP surgery and A&E who agreed it was what she needed. Having dealt with her painful, spasmodic situation many times now, I was told no ambulance was being sent and we had to wait for NHS 24 calling us back. This call came 45 painful, spasm filled minutes later but by then we had been able to secure an ambulance visit and paramedics were giving her entonox and I was sobbing into a towel. Unsure what the way forward is on this one, GP can’t come to house to treat her pain, she’s unable to walk to car, she was in fact unable to get up off the floor.

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Responses

Pat O'Meara

General Manager, Events,

Scottish Ambulance Service

Head of Events

Submitted on 21/01/2019 at 19:09

Published on Care Opinion at 22:07

Dear Flo831,
I was very sorry to read about the problems you and your daughter have been having. It must be very distressing for you to call us and not get the help she needs.
All 999 calls are assessed to ensure that we organise the right response and for some patients we refer them to NHS24 for a more in depth assessment and they are also able in some cases to send a GP.
We do send ambulances when a health care practitioner, hospital or GP requests it, and it normally works without any problems, and so I am unsure why you did not get the ambulance when it was requested.
I'm really keen to help you. We are able to put information in to our computerised command and control system where there are patients who need a special response. Please call me on 0141 810 6101. I hope that your daughter is recovering well.
Pat

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Eunice Goodwin

Patient Feedback Manager for NHS Ayrshire and Arran, Quality Improvement and Governance Team,

NHS Ayrshire and Arran

I respond initially to most of the posts and ensure they are passed to the appropriate team whether they are compliments, observations or grumbles. It is important to make sure all issues are addressed and I try to encourage that to happen for all the posts as required.

Submitted on 22/01/2019 at 13:51

Published on Care Opinion at 14:31

Dear Flo831,
Like Pat, I am really sorry for the problem and distress you have both had a round this situation. When something like this arises that includes aspects of other services, such as NHS 24 and the Scottish Ambulance Service (SAS), we are all keen to work together to help. If you decide to contact Pat, Shona at (NHS24) and I will be happy to work with the SAS too. If you are happy with that, please let Pat know when you contact him.
Of course we are also happy if you would like to contact us individually. I can be contacted on 01563 826222 or by email on eunice.goodwin@aapct.scot.nhs.uk.
Like Pat, I hope you are both well and this distressing episode is behind you at least for now.
Best wishes,
Eunice

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Shona Lawrence

Clinical Governance Lead, Nursing and Care,

NHS 24

Submitted on 22/01/2019 at 14:45

Published on Care Opinion at 15:58

Hi Flo831
Thanks for sharing your experience which I appreciate would have been extremely distressing for you all.
I would like to echo what my colleagues Pat (from the ambulance service) and Eunice (from NHS Ayrshire & Arran) have said in that we are really keen to learn more of your story so that we can work together to improve the experience for patients, their families and carers. I see both have given contact details. I can be contacted on 0141 337 4582 or by email at patientaffairs@nhs24.scot.nhs.uk.
We appreciate that you may only want to contact one of us, but rest assured, we will share information, so that each area can review their involvement so that we can provide you with a comprehensive response.
Thanks again for getting in touch.
Take care
Shona
Shona Lawrence
NHS 24 Patient Affairs Manager

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Update posted by Flo831 (a parent/guardian) 5 years ago

Thanks you all for your speedy replies. I have contacted Pat today and he is planning to discuss plans with other teams.

Eunice Goodwin

Patient Feedback Manager for NHS Ayrshire and Arran, Quality Improvement and Governance Team,

NHS Ayrshire and Arran

I respond initially to most of the posts and ensure they are passed to the appropriate team whether they are compliments, observations or grumbles. It is important to make sure all issues are addressed and I try to encourage that to happen for all the posts as required.

Submitted on 23/01/2019 at 11:35

Published on Care Opinion at 20:16

That is good news, thank you,
Eunice

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Shona Lawrence

Clinical Governance Lead, Nursing and Care,

NHS 24

Submitted on 24/01/2019 at 17:14

Published on Care Opinion at 22:16

Hi Mags
Thank you so much for speaking with me on the telephone. I hope you found our discussion helpful. I checked your contact with our service and could see two calls on the day in question. I understand that, as NHS 24 were calling you back, you already had further contact with the Ambulance Service who arranged for an ambulance to attend. Therefore, NHS 24 did not undertake an assessment as an ambulance was on the way.
It was good for me to understand what happened from an NHS 24 perspective and I absolutely got a sense of your concern for your daughter should such a situation happen again. I hope the advice I provided in relation to your daughter's GP providing NHS 24 with a Key Information Summary (KIS) is helpful. This will assist in any future contacts with NHS 24.
I am pleased that you feel we are all listening to your experience and are trying to make it better for all involved.
I wish both you and your daughter well.

Take care
Shona
Shona Lawrence
NHS 24 Patient Affairs Manager

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Update posted by Flo831 (a parent/guardian) 5 years ago

I realised straight away that an NHS24 call back was possibly going to be some time, so my concern was that my daughter continued in pain during this time. I have contacted NHS24 before and understood the system. My concern was not being heard or understood by the call handler and that NHS24 were not going to be able to add to what I had already done for her. I do appreciate your call and that you listened, taking on board what my struggles had been that day. Thank you for that and your valuable input

Update posted by Flo831 (a parent/guardian) 4 years ago

It’s been a long slog but I thought I should update our situation.
We now have a KIS in place with SAS, not everyone can access it but often just letting the call handler know it’s there is enough.
Our family GP has provided a letter explaining entonox is permitted in her condition, so paramedic teams know they are safe to use.
Input from the pain consultant and team has been invaluable and there is now a MIDAS alert for her ED notes.
Tuesday was the most recent visit to ED and all went smoothly.
The MIDAS may have helped but my guess is it was all down to those who were on duty. Special thanks to Dr Sandford and her team.
Again, many thanks to all who replied, contacted and suggested ideas that might help us

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