"Opportunity to improve person centred care"

About: Inverclyde Royal Hospital / Neurology Inverclyde Royal Hospital / Ophthalmology Monklands District General Hospital / Neurology

(as a relative),

My sister started being investigated around October/November 2014 following 15 years plus of recurrent kidney infections and pain. She was fed-up being prescribed antibiotics for kidney/urine infections when she was convinced this wasn’t actually the problem. After seeing a urologist at Monklands and having an MRI scan, it was explained to her that she had what looked like swelling/thickening around some of her nerves, she was referred to a Neurologist in Glasgow and was seen at Inverclyde Royal where he carried out genetic blood tests which confirmed (after some 6 months wait) that she had Neuro fibromatosis type 1.

My story is not really relating to her diagnosis but more the person centeredness of the treatment and follow up plan for her – or lack of it. My sister lives in Shotts, Lanarkshire, she doesn’t drive and has two young kids. To get to Inverclyde Royal she needs to take two trains and a taxi and the return journey including her appointment takes in the region of about 7 hours. I explained to her at the time when she was referred to Glasgow that Lanarkshire doesn’t provide Neurological services hence she needed to travel to Glasgow. What I am struggling to understand is the need for her now to continue to attend Inverclyde for all follow up appointments. For example, she has been invited to attend an Ophthalmology appointment in February as a result of her condition – presumably there must be some link between NF1 and eye health. She was really surprised when the invite letter from GG&C suggested she needed to attend Inverclyde for this appointment and asked me about Ophthalmology services in Lanarkshire. I told her I was sure this is something that could be done in Lanarkshire but when she contacted Inverclyde she was told that they don’t work with Lanarkshire. It has been a stressful time for her getting her head around the condition and what may seem like a small detail like this cause her greater stress. She would need to either try and organise child care for both children to allow her to attend the appointment or take them with her on what is undoubtedly a long day out. She is also an NHS Lanarkshire employee and she is concerned about having to ask for a full day off to attend future appointments.

In my simplistic mind, I can’t help but think why can’t she attend any appointments like this in Lanarkshire and have the results sent electronically to the Neurologist at Inverclyde who can then discuss with her at her next appointment – which she accepts needs to be in Greenock as this where he runs his clinic from. To me this would go some way towards providing person centred care – and would save NHS Lanarkshire lots of lost employee hours attending medical appointments.

Is this something that can be considered going forward? How bordering health boards can work better together to deliver more person centred care.

Do you have a similar story to tell? Tell your story & make a difference ››


Response from Lorna Gray, Patient Experience, Public Involvement Project Manager, NHS Greater Glasgow and Clyde

Thank you so much for getting in touch on behalf of your sister - it sounds like she has had a long road to where she is now and while I am glad she is now getting appropriate treatment, I appreciate the difficulties that this is causing her in terms of travel to these medical appointments.

I've passed your feedback to the managers for both of these services to highlight the points you've made. The General Manager for Ophthalmology would like to have a look at this in more detail to see if there's a way we could change this to make it easier for your sister.

Would you be able to ask your sister to get in touch with me directly with a few more personal details? My email is lorna.gray@ggc.scot.nhs.uk. I hope that we will be able to find a solution to improve this for her in some way.

Thanks again for getting in touch,

Best Wishes,


  • feedbackforimprovement thinks this response is helpful
    {{helpful-1}} of {{totalOthers()}} other people think so too

Update posted by feedbackforimprovement (a relative)

Thank you for the quick and helpful response. I have updated my sister tonight and she is really pleased someone is at least willing to properly consider the options around this. She will be in touch via email with her personal details.

Updates, changes and questions related to this story