The Corona Virus is changing the whole world. It is understandably monopolising everyone’s thoughts. However, there are many people who are still trapped in a world where their lives are a living Hell and their plight is being by-passed.
Ayla has been in hospital for 8 years. We have made her situation very public. The unit she has been in for the last 4 years now has four wards under special measures and the government in Wales is no longer sending patients to that unit for the foreseeable future. The treatment has been punitive, tortuous and cruel. She is over 200 miles away from home, family and friends. We believe she has been mis-diagnosed and over medicated. She was physically fit when she went into hospital on a voluntary basis 8 years ago. Five years ago she was kept in seclusion for over 10 months. In 2018 she swallowed a toothbrush which is still inside her. In 2019 she had gangrenous tissue surgically removed from her arm. She has been beaten up by her peers 7/8 times and is totally traumatised by the way she has been treated and from the environment she has had to live in. There have been many times when there has been over-use of physical restraint resulting in bruising to her throat, face and arms. She is denied freedom of speech and her human rights have been breached. Telephone calls/skype to me are restricted to 4 x 20 minutes per week.
Currently Ayla is being fed through a nasal-gastro tube – anorexia has not been addressed – they wanted to treat the anxiety first! She is back on antibiotics and understandably but nevertheless worryingly, is unable to have her weekly check-ups at the general hospital.
The ward has now been closed and the commissioners have been given notice to remove Ayla from St. Andrew’s. In the interim period Ayla is now in an ICU with 3-1 support. She is sleeping free from fear for the first time in many years. We have been told by the commissioners “it is costing a fortune”!
I have questioned the diagnosis for many years only to have had my opinion outrightly dismissed by doctors at St Andrews and the commissioners. A local ASD consultant has reported that Ayla had obvious developmental neurological problems that should be further investigated. At the end of 2019 a consultant at St. Andrew’s was asked to assess Ayla for ASD – the assessment took 30 minutes. The doctor informed me that she worked on a male ward; Ayla should be on a ward for women with ASD but there isn’t one. When asked if she was going to complete the assessment she replied that she had done what had been asked of her! She stated that Ayla was not autistic. Her report has been sent to Jane Harris, Director of External Affairs and Social Change at the National Autistic Society. She in turn has written to Steve Moore, Chief Executive of Hywel Dda University Health Board, expressing the charities deep concerns for Ayla’s future and the need for a quality diagnostic assessment. Copies were sent to Vaughan Gething AM, Minister for Health and Social Services; Dr Kate Chamberlain, Chief Executive of Healthcare Inspectorate Wales; Shane Mills, Director of Nursing and Quality and Performance of the NHS Wales National Collaborative Commissioning Unit. To date there has been no response.
Ayla has had a referral ‘paper’ assessment by a doctor from a Women’s Enhanced Medium Secure Service in Manchester. We have not yet seen the report. Currently there are no beds available in Manchester so she will be transferred to the WEMSS unit in London. The presence of Corona Virus will cause a delay – we have been told possibly to the end of April? A lamb to the slaughter!
A hospital 30 miles from home has offered to assess Ayla and would be prepared to create a bespoke placement but the commissioners will not even consider it!
notcarenotfair 