"Outpatient appointment for my son at Orthotics"

My son who is 11 years old had an appointment with Jackie at Orthotics outpatient clinic, Victoria Hospital, Kirkcaldy, Fife in August.  This was to assess new/alternative insoles for my sons footwear. 

My son has Duchenne Muscular Dystrophy which is a progressive, muscle wasting, life limiting condition.  Although ambulant, his walking ability is now affected and he walks on the balls of his feet mostly as he cannot get his heels down (muscle in his calves is no longer being produced).  This means he doesn't have contact with the floor when walking which makes him feel unsteady and unsafe and he has to work hard at balancing when standing up/walking. 

Heel insoles help him have some sort of contact with the surface beneath him although he finds these a bit uncomfortable.  Jackie and I looked at and discussed a few insoles but on trying them my son wasn't keen on any of them.  Jackie advised that the Orthotics Service can make repairs/adjustments to a patients existing footwear so 2 days later I handed in an older pair of my sons trainers.  Orthotics service shall make adjustments in the sole, within the trainer, to raise up the bottom of the shoe in order that my son can feel contact with the floor.  This shall help him when he is walking and provide a feeling of safety when going about school and mixing with his peers.

We have seen Jackie a number of times over the last few years and she makes us feel at ease, both of us, with her warmth and humour whilst performing her role in the upmost professionalism.  She engages with both myself and my son which means appointments are less worrying to attend and pleasurable despite the circumstance of my sons condition.

I would like to say, however, that the room we are seen in is small, cramped, hot, of poor decor and has no ventilation or window(s).  Whilst we are only there now and again for 45 mins or so this must be somewhat an oppressive environment for staff to work in all day.  The admin office, next door, is the same (the admin staff, who job share, are fabulous also).  A brighter, more open and inviting space would do wonders for staff as well as patients.

The location is not too far from the main entrance but when a family member has a condition that affects their mobility, the less walking there is to do the better.  There are disabled bays at the Hayfield entrance but not many (we have a blue badge). Other disabled bays are further from Orthotics eg. paediatric outpatients are the new side/entrance.  I noticed that this week when I was collecting something for my son from Pharmacy that parking close to A&E and ENT is now out of use as building work has started.  I think parking, generally, and not just for those with a disability should be a consideration as trying to find a space (including disable space), even with ample time before an appointment, can be stressful.  My sons Blue Badge does really help but not if there are not sufficient spaces.

I would like to say that my son receives good care from all his medical team at Victoria Hospital (and Edinburgh Children's and Young Peoples Hospital as well) and I am thankful for that.  Any chance to offer opinion/feedback etc to help improve the patient experience, or staff experience when seeing patients, I am happy to do so.

Best Regards