"Treatment stopped due to funding"

After years of suffering with my condition, my specialist at NHS Tayside prescribed a trial of a treatment to see if this would ease my symptoms. The trial started in September 2021 and was a success and the treatment made a big difference to my quality of life and we agreed to continue the treatment.

Unfortunately, whilst the treatment has been approved for use in Scotland by SIGN, and is used by other health boards in Scotland, I have experienced continuous problems with NHS Tayside in seeking to have the prescription authorised for on-going treatment. Since the original trial, I have had to continually chase NHS Tayside in order to have this treatment continued. I have relied on the efforts of the administration staff within the department who have been able to arrange with the company for me to have temporary extensions to the prescription. I would like to acknowledge and commend their efforts to help me. However, each time there has been a break in the treatment which has caused worsening of my symptoms and my quality of life.

In January 2022, I was advised that the company providing the treatment device would not extend the prescription further until the necessary funding arrangements were put in place by NHS Tayside. In February, I contacted the relevant Service Manager within NHS Tayside as I had been advised that the final point in the authorisation process for my treatment was this person. Sadly, I never received a response from the Service Manager but, having also copied NHS Tayside’s Patient Feedback Department, was advised that a temporary extension had been agreed to provide NHS Tayside with time to put in place the funding process.

In April I contacted NHS Tayside to request the renewal of the prescription as the temporary extension was due to end. I was told the treatment couldn’t be extended because the process had not been put in place yet. As I result, my treatment stopped and my condition has deteriorated significantly.

I am at a loss to understand why I am being denied a treatment that my specialist has prescribed, which is authorised for use in Scotland; has improved my quality of life; and is available in other health boards in Scotland. I feel like this is a post-code lottery and I am being significantly disadvantaged to the detriment of my health and wellbeing. Not only have the breaks in my treatment worsened my condition but the additional pressure and stress of having to constantly chase NHS Tayside for this treatment to continue is also causing an exacerbation of my symptoms.

This is not person-centred, safe and effective care and due to the failings of NHS Tayside, my health has been harmed. I am being badly let down by NHS Tayside due to failures of administration. The response to date from Tayside has been to open another complaint with a timescale for resolution of 20 working days, albeit the communication I received from NHS Tayside stated that this timescale was unlikely to be met. 20 days has passed and I’ve been told that I might get a response in another 20 working days. All the while I am left suffering and my health deteriorating