"Let down by lack of ongoing support"

From the minute I arrived at A&E I was met with a very kind and caring triage nurse who took my reasoning for attending seriously and actually came and asked how I was getting on whilst I was still in A&E. All of the staff in A&E were excellent and I felt listened to and cared for despite the fact they are extremely busy!

I was then admitted to AU1 where I was looked after by nurses Amber and Kaleel. Amber is a newly qualified nurse who I could not fault, she is kind and caring and is a real asset to the ward. I was also looked after by Kaleel who was also kind and caring and I never felt with either nurse that anything was too much trouble. Both nurses were very much on the ball at all times and I was able to witness professionalism, patience and kindness from both when working with elderly patients who were in the same bay as me and was very heartwarming to witness.

As a health professional myself, I am aware how busy things can be and this was clear to see, however patient care was never compromised. The Dr's on the ward and the Cardiology Reg I saw were all very sympathetic to my situation and took time to listen. I could in no way fault the care from any of the staff I was given, every single one were amazing.

The only complaint I really have was that I was given a diagnosis of POTs and SVT and started on medication but was told this would not be followed up by Cardiology, medication will now be managed by my GP. I feel let down by this, this has very much been life changing for me and a lot to take in. I'm very unsure what my future will look like but feel there is no support around this which quite frankly feels pretty scary.

My  GP is great and I cannot complain about them but this is a very specialist and complex condition. I would have expected to be seen by Cardiology at least until I was settled on medication and then discharged to Community Services. I feel this has left me in a position where I need to consider private follow-up with Cardiology.

It feels very unfair that in England there are clinics available to support patients with this diagnosis but in Scotland there is absolutely nothing. At the moment I feel lost, I'm still stuck pretty much bedbound and have no idea where to turn next. I understand this condition is not curable but neither are chronic conditions such as eg. Diabetes, MS etc but there are still supports from Specialist Nurses and clinics.

I also have EDS for which I am in the exact same position, this now meaning I am trying to manage two chronic conditions that affects all aspects of my life with pretty much no support.

As a healthcare professional I am aware of other services such as OT and know to get in touch with my GP for a referral, however, many patients receiving the same diagnosis may not be aware of what services are out there and what they may be able to help with which is another reason ongoing support is beneficial to patients. I just want to iterate, I in no way complain about the staff and I am very very thankful for the care I was given, my complaint lies with the lack of support for this chronic condition as discussed.