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Torfaen County Council and local Health Authorities fail carers

13 February 2009

Two parent carers from Torfaen have had a complaint upheld by the Ombudsman for Wales.

Two parent carers from Torfaen have had a complaint against Torfaen Local Health Board, Gwent Healthcare NHS Trust and Torfaen County Council upheld by the Public Services Ombudsman for Wales.

Mr and Mrs T care for their son John (not his real name) aged 20 who has severe autism, epilepsy and severe challenging behaviour.

Mrs and Mrs T have had a previous complaint upheld by the Ombudsman against Torfaen County Borough Council relating to their failure to provide a consistent level of respite provision for their son.

This complaint arose when John reached 18 in June 2006, the transition period for children in special schools is from 14-18 years, and authorities should have started to work together during this period to provide a seamless transition from one service to another.

In October 2006, John was confirmed as being eligible for NHS continuing healthcare and the Local Health Board started the process of developing a day service for John that could also be used for respite purposes.

The lack of forward planning at an earlier stage, and general lack of co-operation and co-ordination between the bodies concerned, meant that when John reached 18, because of the delay in locating a suitable day-care placement John had to stay at his special school until the age of 19, despite his parents wishes.

John finished school in July 2007, he received respite care funded by the LHB at his school during the summer, however from September 2007 there was no day care or respite care package in place from him. From then on Mr and Mrs T provided 24 hour care for their son. The lack of support from all concerned, during this period has had a significant impact on Mr and Mrs T's health and well-being, including anxiety, stress and depression.

As a result of their complaint the Ombudsman has recommended that the bodies concerned, apologise to Mr and Mrs T and John (not his real name) for their shortcomings and place a sum of money, £20,000 from the local health board and £5000 from the local council in a trust fund for John.

The Ombudsman also stated that the findings in the case have highlighted the impact of the lack of guidance regarding the arrangements for continuing NHS healthcare for children and he urges the Welsh Assembly Government to ensure that guidance is produced as quickly as possible to assist health boards and their successors to make, consistent, timely and appropriate decisions in such cases, especially with regard to issues of transition.

Roz Williamson, Director, Carers Wales said: "This failure of authorities to think ahead and work together to provide proper services to disabled people and their families is all too common.

The public bodies' lack of co-operation and co-ordination left the family to provide all the care that John needed at the expense of their own health. We know from a survey we carried out last year that 79% of carers in Wales said their health had deteriorated due to their responsibilities and 89% said that they had been unable to cope with their day to day caring duties due to exhaustion, anxiety or fatigue.

The 350,000 unpaid family carers in Wales save the Welsh economy a staggering £5.69 billion pounds a year. The Ombudsman also recognised in his report, the substantial amount of money the family saved the state during the time they were left with no services and the personal cost in terms of the stress and anxiety the family has faced in providing the care.

The failure of public bodies to ensure that carers have the services they need and regular time off could be challenged in the courts as an infringement of the Human Rights Act, notably the right to respect for private and family life".

Mr T, a member of Carers Wales, said "Although the decision is without doubt, a huge relief, and finally puts closure to a large part of our lives, the fight has been arduous, long and immensely emotional. We have fought for various services for 17 years of our son's life and the emotional and financial hardship involved in the continuous battle has been horrendous. Whilst the compensation awarded to our son, cannot in any way be compared with the distress and uncertainty we have endured, it will at least help to enable him to enjoy a quality of life".

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