“Most people are just wanting resolution and they are not getting it”

• Written by: Sue Lavery
• Published: 5th June 2018

We asked Sue for her views at our Action: The 2nd Health and Social Care Integration Event.

At our Annual Conference, Action: The 2nd Health and Social Care Integration Event on 4 June 2018, we interviewed a range of delegates to monitor their opinions on the conference and their thoughts on how to implement action in health and social care.

Sue has worked as an advocate and volunteer of the Health and Social Care Alliance Scotland (the ALLIANCE) for many years and regularly attends our events. At this year’s Annual Conference she decided to share her views and experiences of being a daughter of parents with long-term comorbidities.

(these views and opinions are reflective of Sue’s experiences at the time of this recording)

We asked Sue:

Why is action needed in health and social care?

Sue – In a minority of occasions with NHS Greater Glasgow and Clyde where issues arose, my mothers voice was ignored and as mum’s power of attorney my voice was ignored too. First of all I would like to say how indebted we are to the beautiful care that mum got from many NHS GGC staff but when issues arose like in her bed she told me she was bullied by a member of NHS GGC staff and she begged someone through complaints GGC to come and listen to her and hear what she had to say. She lay frightened and alone, she couldn’t get out of bed independently. And when last year, when she was in bed at home, and I had asked the GPs, I had asked the nurses what do I do if mum cannot swallow her medication, she already was in stage one. I was ignored with the result that her endless night, mum has no morphine in the house, no just-in-case box there and ready. I was out at midnight getting morphine and since that happened I have said to NHS GGC and to GPs that I just want improvements in your palliative care pathway and I’ve been ignored. I’ve actually been told it’s a strong pathway and this has taken a year and not once has anybody said no that was wrong, it needs to be righted. Change has not come within NHS GGC.

If you were to prioritise one thing (and money and resource was no object) to action what would it be and how would it improve health and social care?

Sue – You need to get independent people when problems arise to come straight onto the ward or to come into the home environment. Or if relatives like me write letters on behalf of their late parents experience, an external person needs to come onto the ward or into the home and hear what we have to say and ensure that our letters are not ignored as my letters are being ignored.

How would you sum up the event and what were the key moments?

Sue – It was utterly inspiring and moving to hear other people’s stories. I was very impressed by the lady from East Ayrshire, Head of Health and Social Care Partnership, I think that she should set a prototype because obviously she has listened to people who have the lived experience. I felt very moved hearing the sheer, utter frustration of people who are not listened to by bureaucracy. And its hard enough being a carer, it’s hard enough having a long-term condition without having to constantly battle for justice. Most people are just wanting resolution and they are not getting it. Today I sensed that most strongly than ever.

You can also watch Sue’s interview with us on the ALLIANCE YouTube channel (this link will take you away from our website).

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