A FATHERS STORY
WHAT started off with a bruise on his daughter’s leg has turned into one man’s pursuit for answers.
Dermod Ryder’s journey has taken him to virtually every point of contact within the health care system and led him to challenge the very legislation that governs it.
But six years on Dermod, from Antrim, fears he may be losing his fight for information from within a system that he has completely lost faith in.
“To tell you the truth and it breaks my heart to say it, but given everything that our daughter has been through as a result of this system of care and everything that she could potentially have to face in the future, I hope she goes before us,” he told The Detail.
Dermod is the father of 15-year-old Katie. She has a rare chromosome abnormality, is profoundly learning disabled, autistic and epileptic. She has a mental age of around three and is in need of constant care. Over the years Katie’s family have struggled to find what they see as a good fit for their daughter in terms of the right respite care.
Dermod approached The Detail because he believes the injury Katie suffered six years ago highlights bigger issues about harm which can happen to vulnerable children and adults like her.
The most recent statistics held by the Department of Health, Social Services and Public Safety (DHSSPSNI) show that there were 1,271 Child Protection Referrals for the quarter ending 31st March 2011. These relate to cases where there are allegations or suspicions of child abuse involving children across the care spectrum.
The figures for vulnerable adults reflect a similar picture. In the financial year 2009-10, which is the only period there is robust data for at this stage, there were a total of 1,184 referrals to health trusts about potential risks to adults. This was across the four categories of adult care: elderly people, those who have mental health problems or suffer from a learning disability or physical disability.
For years Dermod and his family have struggled to have proper respite care provided by the Health Trust for their daughter. When she can no longer be cared for at home she will have to be cared for in a permanent residential institution.
Now with the latest statistics showing such a high number of adult referrals linked to potential abuse, and their own experience of trying to get answers when an injury has occurred, Dermod and his wife Paula, are concerned about what the future could hold for their daughter.
Of the 1,184 adult referrals in 2009/10, 750 were followed up with a protection plan for the adult who was considered as having been at risk. This means over half of the referrals were considered serious enough to warrant further action.
Like any case of potential abuse or risk, the context of each can be variable. The cases that make up these figures could involve sexual abuse, a failure on the part of a carer to provide timely medication, the theft of money or personal belongings, or it could relate to some form of bullying.
Dermod said: “A lot of people will be shocked when they hear a parent even contemplate the thought of their child dying before them, but I first said that five or six years ago when our Katie was first having difficulties in these respite facilities and I still feel the same now. The latest statistics about vulnerable adults only serve to justify my worst fears.
“It’s an awful thing for a parent to have to say but I know I’m not the only one who feels like that.
“When you’ve seen someone you love, who is vulnerable in the first place, go through a system like this and get treated like dirt, you feel helpless, it’s devastating.”
On the last occasion that she was in residential respite at a registered children’s home Dermod’s daughter came home with “unexplained injuries” to her legs and thighs. Because of Katie’s disability – she cannot speak – she was unable to tell him what happened. He believes information about the incident was intentionally withheld from both him and his wife.
He said: “I was getting her ready for bed that night after she had been in respite for three nights and I came across severe bruising on her leg. We took her to Antrim Area hospital and the doctor agreed that the bruising on her thigh was suspicious. Social services were notified and investigations got under way, but nothing ever came of it.
“What we would later find out by getting access to some of the investigation documents which we only obtained through the intervention of the information commissioner, is that during Katie’s stay at this institution there had been a note left by a supervisor saying that the bruising had been noticed and that her parents should be notified immediately."
Despite the clear instructions given to the respite placement, Dermod and his family were never notified.
“We never received any notification and we only found out when I came across the bruises myself when she got home.”
To this day Dermod and his family have received no explanation for the bruising Katie sustained, whether innocent or otherwise.
“You just feel completely helpless and the thought that Katie will have to go through a flawed system for the rest of her adult life.”
The system for regulating vulnerable adults and children is complex.
Potential abuse of vulnerable adults In Northern Ireland is overseen by three separate bodies – the health trusts, the Regulation and Quality Improvement Authority (RQIA) and the PSNI.
Where an alleged instance of abuse of a vulnerable adult takes place, the primary responsibility for protection lies with the ‘host’ health and social care trust – if it is criminal it is handed over to the police; if it relates to individual care the trust leads, and RQIA as the regulator will become involved where a potential breach of regulations has occurred.
However responsibility for child protection ultimately falls to the DHSSPSNI and the five Health and Social Care Trusts who are individually responsible for providing residential care services to children and young people within their areas. There are also a number of private and voluntary agencies that provide residential care services, for example, Barnardo’s and Extern.
When there is a report of alleged abuse against a child, a strategy meeting is convened within 24 hours in line with regional procedures. This will involve social services staff from the local HSC trust and the PSNI.
In Katie’s case, social services became initially involved after her parents had taken her to the hospital and the doctor deemed the injuries suspicious enough to take a photograph and pass it onto them.
With the conclusion of the investigation, Dermod and his wife were informed by the investigating team that their findings were effectively inconclusive and the cause of the bruises would remain unknown, but it was possible that they could have occurred at school.
NOT JUST A NUMBER
A breakdown of the figures obtained by The Detail show that there were 1,271 Child Protection Referrals for the quarter ending 31 March 2011, 19% higher compared with both the previous quarter and the same quarter in 2010. Over four in five referrals 44%(556) originated from within Social Services, 14% (182) from the PSNI, 14% (175) from ‘school’ or an ‘educational welfare officer’, 5% (65) from relatives and 10% (128) from a range of ‘other’ sources.
We asked the Health and Social Care board to provide us with a breakdown of the vulnerable adult referral figures, but they claimed they were unable to provide this information.
We then contacted each trust individually in order to paint a more detailed picture of how the figures broke up regionally. During 2009/10 the South Eastern Trust had 54 referrals; the Southern Trust had 75, while the Northern and Western trust had 88 and 36 respectively. The largest amount of referrals came from the Belfast Trust amounting to 478 referrals.
However, The Detail has identified a gap in the figures. The original total supplied by the Health and Social Care Board amounted to 1,184 vulnerable adult referrals, whereas the combination Trusts figures amounted to 731 referrals – a deficit of nearly 500 cases.
We contacted the Health and Social Care Board about this and we found that the difference in the figures is because the individual Trust responses only included referrals made by regulated care homes and facilities. This is despite the fact that our original request asked for the same data supplied by the HSC Board, including referrals made from all sources, such as referrals made by private individuals, people in workplaces or other parts of the community. The individual trust figures are therefore most likely an under representation of what the actual number in each trust area is.
We sent a Freedom of Information request to the PSNI to try and find out exactly how many referred cases resulted in criminal investigations. They responded saying that the cost of complying with our request for information would exceed the “appropriate costs limit” under Section 12(1) of the Freedom of Information Act 2000.
The PSNI claim that they are in the process of re-examining how they solve crime involving cases of alleged abuse. At present they record information according to category of offence rather than the category of victim.
As part of its three year review programme, the RQIA is currently conducting an independent review examining the implementation of the Protocol for Joint Investigation by all organisations involved. From 1st April 2009 to 31st March 2010, its expenditure was over £6m.
Malachy Finnegan from the RQIA believes the latest statistics undoubtedly highlight a worrying trend.
He said: “Whether it’s against children or vulnerable adults, we take these allegations of abuse figures very seriously.
“The current review is examining a range of issues, including the reporting of vulnerable adult issues to health and social care trusts and the PSNI, and the effectiveness of follow-up arrangements. The findings of this review are due for publication later this year.
“Where necessary, the joint report will make recommendations for improvement to ensure the safety and wellbeing of all vulnerable adults.”
Speaking to The Detail, Health Minister Edwin Poots said that while the statistics highlight a worrying trend they also show the high level of response that regulatory bodies have in Northern Ireland.
He said: “I am acutely aware that behind the statistics there are individual human beings who may have suffered harm at the hands of others, whether intended or because of a lack of knowledge about how to properly deliver the care and support needed.
“But I also believe the statistics quoted are an indication of the positive responses made by the HSC Board and HSC Trusts to reports of concerns about possible abuse. To this end, my Department is working jointly with the Department of Justice, with input from other government departments, to bring forward a policy paper which will set the future direction for Adult Safeguarding work.
“Such abuse is alas not a new phenomenon and the conversation with the public to raise awareness is an important one.
“I would urge anyone who has any concern or worry that a vulnerable adult or child may be being abused to report their concerns to their local HSC Trust; to the police, if a crime is suspected, or to the Regulation and Quality Improvement Authority, where the person is living in a home or receiving a service regulated by that body.”
A RIGHT TO INFORMATION
Under the Department of Health’s latest definitions a vulnerable adult is someone who is over 18 years of age and is in need of community care services or are resident in a continuing care facility by reason of age, illness, disability or mental health issues.
With Dermod Ryder’s daughter turning 18 in under three years, he finds it difficult to contemplate the thought of his entering any sort of care system again.
“Vulnerable adult or child it doesn’t matter, the problems are the same," he said.
“We’ve made the complaints, seen the joint protocols happen and apparent ongoing police investigations that never amount to anything.
“I’ve come to the conclusion that the priority for these bodies in many cases is preservation and protection of staff and scant regard is paid to the welfare of the vulnerable child or adult where it might impinge upon their staff.”
Dermod and his wife now share all of Katie’s care needs. It’s a decision that he believes has been forced upon him as the Trust has imposed what he says are unacceptable conditions upon its giving the family the respite care to which it is entitled.
The final straw came after the trust in charge of Katie’s respite placement refused to release its monthly management reports. The trust claimed the reports contained sensitive personal information relating to children and their parents.
However, Dermod has identified what the Department, Trust and RQIA have acknowledged in writing as an anomaly in the legislation that means parents are lawfully entitled to these reports.
Dermod believes the reports should not contain personal information relating to children and their parents, for there is no lawful requirement to put such information in them. Trusts have no parental rights over disabled children.
The monthly management report is essentially a written report on the conduct of a home or care facility, Its author may interview the children accommodated there, their parents, relatives and persons working at the home as appears necessary in order to form an opinion of the standard of care provided.
This process also involves an inspection of the premises, its daily log of events, records of any complaints and a representative sample of records.
In the Children’s Homes Regulations (NI) 2005 it states that copies of the report are to be provided to:
( a ) The Regulation and Improvement Authority
( b ) The registered manager of the children’s home
( c ) The Directors of the Trust
( d ) The placing authority
However, under the Children Order (NI) 1995 a child who is accommodated by a trust for more than 24 hours becomes what the legislation defines as “looked after”. Under the Children’s Homes Regulations (NI) 2005, the Trust then becomes the “placing authority” for a “looked after” child accommodated in a registered children’s home. However, where the accommodation lasts for less than 24 hours, the child is not “looked after” and the parents become the “placing authority.”
Dermod believes that as his daughter would not stay in the respite unit for longer than 24 hours at a time, both he and his wife are the “placing authority” and therefore have a right to receive the management report.
Dermod has written a series of letters to the appropriate authorities including the RQIA and the Department but he said he has yet to receive any coherent or consistent response on the matter.
He said: “I was assured by a trust official that I would get the lawfully mandated monthly report over (that official’s) dead body. No remark can perhaps better summarise the trust’s utter contempt for those who claim rights that the trust would rather they did not have and its disdain for the law which grants those rights.
“On those same data protection principles that the trust cite, surely then they should refuse to supply the same information to the RQIA and the trust directors?”
The trust eventually offered to provide Dermod and his wife with a redacted copy of the monthly monitoring reports for any period their daughter was to stay at the respite centre, but without complete access to the full report Dermod saw this, as further insult to injury. Its current stance is that in order to gain the respite to which they are entitled, both he and his wife must give an undertaking not to seek the report.
Dermod eventually received a response from Glenn Houston, chief executive of the RQIA who said that while he noted Dermod’s argument that he should receive the same information as all other parties listed in regulation 32(5), he believed the trust’s proposal was reasonable.
He also advised that the RQIA would not enforce the law as the department had reviewed the regulation in relation to the definition of “placing authority” and would be carrying out a targeted consultation in respect of this regulation.
When we first contacted the Department of Health they said they had no plans to amend the legislation and so no plans for a consultation.
However, an internal letter from a senior member of DHSSPSNI obtained by The Detail appears to contradict this statement.
In the letter dating back to December last year, chief social services officer Sean Holland issued a targeted consultation on proposed amendments to the Children’s Homes Regulations (NI) 2005, including a draft of the proposed amendment to be laid before the Assembly.
The letter, which was sent to the RQIA and Northern Ireland Children’s Commissioner among others, states that the main purpose of the proposed amendments is to ensure that “the interpretation of the term ‘placing authority’ in respect of children placed in children’s homes for short periods of care, reflects the Department’s intentions in this matter”. The letter also outlines that any comments in relation to this should be received by Tuesday 8th February 2011.
We contacted the DHSSPSNI citing this information and it was then confirmed that consultation on the proposed amendments began in December 2010 and ended on the 8th February 2011.
A department statement said: “The purpose of proposed amending regulations is to ensure that: the interpretation of the term ‘placing authority’ in respect of children placed in children’s homes for short periods of care, reflects the Department’s intentions in this matter; and the regulations do not compromise the right of children in residential care, their families and staff to have private and sensitive information held in confidence.”
The Detail understands that the final draft of the proposed amendment is with legislation equality unit for onward submission to DSO.
Dermod said: “This is just the latest in a long line of confusing mandates. Initially the chief executive of the RQIA told me that as long as we chose not to access the service, the trust has no obligation to provide me with copies of the monthly report and consequently the RQIA has no grounds for enforcement.
“This is complete nonsense because the very reason we don’t want to send our daughter through the system is because of the lack of transparency and accountability. It’s nonsense!
“The whole system is inherently flawed in my opinion and simply not fit for purpose.”
Throughout the years Dermod has made a number of approaches to local councillors and MLAs but to no avail. However, with a new Health Minister and health committee in place he is open to the idea of exploring his option once more.
“I’m aware of what this is doing to our family life; all I want is a better life for my daughter within a system that is clearly accountable and for us to have a normal family life," he continued.
“Over the last couple of years I have only had two nights on my own with my wife when Katie was being looked after by our eldest daughter on that occasion, but I’d rather that than have to put her at risk again.
“For a system that regards itself as the ultimate arbiter of a child and their family’s best interests, there simply isn’t enough transparency in the system and you can’t get away from that fact.”
He said: “Unfortunately I believe these latest figures only tell half the story, and are merely the tip of the iceberg. Out of those cases that were followed up I wonder how many actually made a difference in those families’ lives and how many were happy with the outcome.
“From what this family has been through it has showed me one thing, the protection of the institution comes first and the family comes second.”