The story of an innocent

Age 9 my daughter, A, was diagnosed with a chronic anxiety disorder and OCD. We believed she was on the autistic spectrum but were told she didn’t fulfil diagnostic criteria. No help from CAMHS.

At 15 Anorexia developed. Still no help.

At 16 taken to A&E for a self inflicted wound and was found to have an irregular heartbeat. She was admitted to the general hospital for NG feeding and subsequently transferred to an ATU 60 miles from home.

She stayed intermittently over a period of 18 months. Fortunately the unit was run by an extremely efficient and caring team, led by the one psychiatrist I totally admire and respect. The families feelings were considered and listened to. The team were open and honest throughout. Medication was tried but stopped when proving to have a detrimental effect. After care from the unit was superb. At the end of 18 months she was physically well but the doctor admitted they were no further forward in finding the underlying cause.

At this stage we sought a private assessment from a family friend who was a consultant clinical psychologist. The report stated that A had a deficit in her executive functioning and that future clinicians should be careful not to attribute her behaviour to BPD.

We had a level of optimism as we progressed to adult services but sadly this was short lived as the psychiatrist failed to acknowledge the report and implied I was an overprotective mother blowing things out of proportion.

Inspite of little help and a lack of understanding from adult services A was physically well. Mentally she was still struggling and her self injury got significantly worse. After two suicide attempts she was admitted to hospital on a voluntary basis. At the point of admission she was only on a non therapeutic dose of an anti depressant. She was not aggressive. Our local unit is a holding place only, meds were given but no therapy and no expertise in anorexia. Initially A wanted to stay as they permitted her to starve. Needless to say her physical and mental heath deteriorated to such an extent that coming home was no longer an option. We had to agree to A being sectioned so she could be transferred to a specialist unit. It took several months to get approval for funding. At this stage I again questioned the diagnosis of BPD and stated that their proposed treatment wouldn’t work.

A was sent to the priory in London, 200 miles from home. Their treatment didn’t work. After four months she was transferred to a low secure forensic unit in Cardiff, 70 miles from home. We hoped that a new team would question previous failures.

The new team resented any comments from the family and we were told “we’re her family now”. They did their best to alienate us and ignored any constructive suggestions we made. Their treatment was punitive and lacked structure. She was over medicated, restrained for many hours on numerous occasions and was made to wear a helmet continuously. She became aggressive so was put in seclusion in a converted bathroom on a mattress on a concrete floor where she stayed for 10 months. Complaints were made to Health Care Inspectorate and the safe guarding team but to no avail. The family was never privy to any documentation. Ombudsman did not uphold any of the 10 complaints we made. The RC requested A be transferred to another unit, one of the reasons being the families inappropriate interference. They were unable to find a suitable low secure placement. Following conflicting opinions a decision was made to transfer A to a medium secure forensic unit in Northampton, 220 miles from home. Several attempts were made by the family to prevent this happening including consultation with the Welsh Assembly. Prior to the final decision some comments made were: A should take responsibility for her behaviours – she has capacity to control her actions; A would benefit from being away from her family and Wales; A should be put through the judicial system.

A was initially placed in an assessment unit. The unit was brutal and showed no compassion or understanding. Further trauma and significant deterioration. No change in diagnosis. She was moved to another ward where initially there was an improvement. The RC had a different approach and for the first time since A had been in hospital, now five years, we felt A was in a therapeutic environment. Then the RC change and I quote one of A’s peers “more meds, more punishment, less freedom. This proved to be true.

At this time our home team had a new consultant. He observed the many references to ASD in A’s developmental history. He referred us to a consultant specialising in ASD. The result of this assessment was that A had obvious developmental neurological problems which needed to be further explored. The RC categorically denied that A was autistic because she was warm and friendly. She also stated that she felt the home team had been unprofessional in requesting the assessment. Both the commissioners and the current RC supported her decision.

As a result of our AM’s increasing support A’s RC requested an assessment by a consultant from their own ASD unit. We felt there was a conflict of interest and the assessment only took half and hour. The result states that A has obvious autistic traits but is not autistic. In the doctor’s opinion “it is possible, indeed likely given the reports that I have seen that her autistic symptoms were much more prominent when she was a child. This may have led to her having social difficulties which could have acted as precipitating factor for her mental health condition”. During a meeting with this doctor she stated that A should be on a ward for women with autism but there isn’t one available!

Some of the current major concerns:-

She currently has a toothbrush in her lower intestine which she swallowed 18 months ago.

She recently had gangrenous tissue removed from her arm. I believe this arose from an incident when her 2:1 staff both fell asleep, resulting in A biting a chunk of flesh from her arm requiring 10 stitches. The wound is still infected.

Barely eating – menu plan not sufficient to sustain any human being.

Heavily medicated – obvious side effects with no known benefit. Forced medication.

Environment not conducive to well being.

On going staff shortages resulting in a dangerous environment. On New Years Eve police had to be called to the ward and a patient was tasered.

Untrained agency staff.

Excessive restraining resulting in bruising.

Missing personal possessions – to the value of £800

Frequently inaccurate reports.

For the past 18 months our phone calls have been limited to 3 x 20 minutes per week (prior to this we’d speak for up to three hours a day). Our conversations are restricted and recorded by a senior member of staff. No privacy – no Human Rights.

This is a brief summary of my daughter’s life within the mental health system – a living hell. I’ve barely touched on the tortuous experiences she has had to endure. A human rights solicitor has agreed to represent me but will be focusing on A’s physical health. Our AM is proposing to visit with A with the next month. She continues to fight to help A but has no support from our health minister.

I would like to take this opportunity to thank the many members of staff who have supported A with care and compassion.