A GRIEVING father is to hold a meeting with care bosses to try to ensure lessons are learned from his

disabled daughter's death.

Ray Heeks, of Blackamoor Road, Guide, claimed his family and two-year-old daughter, Eva, were neglected by the authorities which were supposed to support them.

His views have been backed by disabled

charities and support groups.

And today a social services boss said the concerns were real and valid and he would ensure that lessons would be learned if specific problems were highlighted.

Eva, who needed 24-hour care from her parents and breathed with help from an oxygen tank carried in her pram, died in Ray's arms on December 12 2004, after suffering with a chest infection.

She caught a strain of meningitis as a baby and was left deaf and blind and unable to walk, talk, breathe or eat on her own. Doctors told the family her condition was terminal, although they don't link the standard of care she received with her death.

But Mr Heeks, who works for Twin Valley Homes, has vowed to campaign for changes, with wife Julie, so other families don't have to struggle against the "bureaucracy and ignorance" that they say blighted Eva's short life.

Julie was forced to give up her nursing job to look after Eva full-time and the family had to rely on help from support groups and charities. Ray said: "Whenever we asked for help and support in caring for Eva we were badly let down.If it wasn't for support groups and charities, we simply wouldn't have survived."

Ray claimed:

o A chair that would have supported Eva when sitting upright was ordered by social services but took six months to arrive and when it did she had grown so much that it no longer fitted her.

o Social services only provide £8 per hour for families to employ respite carers, but it costs a minimum of £22 per hour to employ the type of nurse qualified to look after Eva

o Social services-employed carers were not allocated to Eva because, despite requiring round-the-clock care, the family was told she didn't fulfill the qualifying criteria

o Eva had to wait with sick children for check-up appointments at local hospitals, includeing Queen's Park in Blackburn, despite the fact that even catching a common cold could have proved fatal

o Doctors prescribed essential medication for Eva which pharmacies did not stock and would not order in advance.

Neither Blackburn with Darwen Council social services, East Lancashire Hospitals NHS Trust or the local Primary Care Trust would comment on the claims as they do not comment on individual cases.

But Stephen Sloss, director of social services for the council, said that Mr Heeks had real concerns which would be discussed at a meeting with senior managers in the near future.

He said: "Mr Heeks has real and valid concerns about the ways in which the NHS, Blackburn with Darwen Primary Care Trust and the social services department of Blackburn with Darwen Council discharge their responsibilities and, in particular, how well he feels that parents and children with disabilities are supported.

"If there are lessons to be learned about service improvement through better joint working, I will ensure that specific issues raised by Mr Heeks are addressed. We will be looking at improving the working relationship between the health service who provide nursing care and social services who provide social care so that we can ease the burden of families with terminally ill children."

Mr Heeks added: "I have done a child protection course and know that if parents gave the level of care that the authorities are giving it would be classed as neglect. The Government in turn are guilty of neglect for failing to do anything about it .

"The pressure on our family was immense as we constantly tried to juggle, caring for Eva 24 hours a day, looking after our other two daughters, and work. It put our relationship under a lot of pressure and at the time almost split the family up."