"They abruptly changed their minds"

My daughter is in her early teens and has a diagnosis of ADHD. Her symptoms of restlessness, loss of focus and executive dysfunction, emotional dysregulation, impulsivity and difficulty risk assessing dangerous situations meant that her school work was failing, she was getting into trouble frequently at school and outside of school, resulting in police and social work involvement as she had impulsively taken illegal substances at 12 years old.

Due to the astronomical wait times for ADHD assessments in North Ayrshire via CAMHS, I had her privately assessed in March 2022. This assessment was carried out by a legitimate, specialist nurse-led service, employing nurses who are highly knowledgeable about the condition of ADHD, the nurses are registered with the Nursing Midwifery Council and the company is regulated by Healthcare Improvement Scotland.

She was diagnosed with ADHD combined type. Her assessment states that the diagnosis of ADHD indicates a moderate level of impairment and disruption to her life on many distinct levels including educationally, self-concept, and in her relationships. Not detecting or treating ADHD can have widespread ramifications. It is envisaged that along with the relief that this diagnosis might bring, that an explanation has been found for her difficulties, there is also a responsibility for continuing to put in place measures that enable her to function more effectively and achieve a higher quality of life.

At the point of diagnosis, the specialist nurse contacted our local GP practice via email and requested the GP engage in ‘Shared Care’ with them, allowing her to have 6-8 weekly private appointments for medication reviews where they would monitor her physical and mental health, provide these regular updates to the GP and have the GP prescribe the required medication. The medical practice was agreeable to engage in the shared care model & had prescribed for her on 6 occasions (3 times as requested and a further 3 times as repeat prescriptions).

However, at the latest medication review (private), it was felt her current medication was no longer of benefit due to steady weight loss and appetite suppression. So in keeping with prescribing guidelines, a medication change would be the next appropriate step to trial. They emailed the GP Practice the same afternoon to inform them of the changes made to medication and reasons why, asking them to prescribe the alternative.

One week had passed and I had still not heard from the GP practice , so I contacted their reception who told me I need to speak to a GP as they would not issue this prescription. I made a telephone appointment with GP that morning, who informed me they do not accept requests from private medical companies as they cannot ensure proper follow-up care.

It was also explained to me that the GPs in the practice do not know enough about ADHD medications and that a team discussion had been held with all GPs from the practice that day, where they had collectively decided they would no longer accept prescribing advice for ADHD unless it came directly from a CAMHS consultant.

The GP said he was sympathetic to our situation and understood stopping her medication would have a detrimental impact, therefore has now forwarded her details and assessments to a CAMHS consultant psychiatrist in North Ayrshire, requesting prescribing advice. More than a week has passed and there has been no response from CAMHS.

The medical practice have been clear they will not prescribe this medication unless the CAMHS Psychiatrist approves. This would mean that the CAMHS consultant would require to look through her case details, despite her not being a CAMHS patient, which they can refuse to do as effectively this would be skipping the CAMHS waiting list queue. She is already on the waiting list for CAMHS to take over her ADHD treatment, and has been for several months. However the waiting list is extremely long and CAMHS could not provide an estimation of wait time.

She is currently unmedicated & has told me since stopping the medication she has been getting into frequent trouble from teachers at school. I have also received a phone call from her school in relation to her deteriorating behaviour.

I did not go private because I wanted to. If I did not go private then my daughter would get into more trouble and she would still be waiting for an assessment from CAMHS. I thought I was doing the best for my daughter and thought going private would help ease the pressures on the NHS. Had CAMHS been able to provide a timely service, we would not be in this situation. I have priced the monthly medication and without prescription I will require to a significant amount per month for her medication. As a single parent in the cost of living crisis, this is very expensive, but I have been backed into a corner and have no choice, unless I wish to helplessly watch my daughter deteriorate. It seems unfair that I require to pay this when NHS prescription charges were abolished in Scotland.

I don't understand why the GP who was once happy with the follow-up care provided by the private provider can abruptly change their minds, thus leaving a child unmedicated. Whilst I understand the politics around Shared Care in Scotland and GPs having the legal right to refuse, with CAMHS Scotlands current wait times, it seems absurd that more is not being done for them to work together to ease the pressures on CAMHS; moreover providing more children with the right diagnosis and treatment in a timely manner.

Can’t the GPs work alongside private companies in order to ease the burden on the NHS? It seems counterproductive and is adding further strain on the service as well as having a grossly negative impact on the mental wellbeing of Scotland's young people.

I have since heard back from the GP surgery that CAMHS have refused to give prescribing advice without seeing my daughter. CAMHS confirmed with the surgery that she is on the waiting list, but is nowhere near the top and advised my only other option is to pay privately.