Jun 172016

By John Wallace.

Teach-The-WorldUsing the Scottish Government’s own figures, 300,000 people in Scotland have been totally ignored in the badly thought out and intrusive named person legislation.

People living with a rare disease and their families face significant social and daily life challenges which affect their autonomy, their dignity and their fundamental human rights.

It is not rare to have a rare disease, there are between 7,500 rare diseases in Scotland, 75% of them affect children and 80% are hereditary.

Integrated care provision in coordination between medical, social and local support services, via multidisciplinary care pathways and innovative care solutions, is a crucial game changer to tackle the unmet social needs of people living with rare diseases and none of this was even considered in coming up with the named person legislation. Nobody asked anyone in the 300,000 strong rare disease community in Scotland.

Families of children with rare diseases represent a motivated group striving to find what is best for their loved one, and the vast majority make the time and find the energy to sift through many thousands of pieces of information to find that one pearl that helps their child turn a corner, no matter how small.

They understandably dedicate their lives to researching their children’s condition. This dedication, in turn, can mean that even as they turn to medical professionals for help, it is those same professionals that in fact look to the parents for guidance.

Parents are accustomed to being the experts; in fact, they are acknowledged to know more than the specialists, even at renowned children’s hospitals worldwide, because while we expect our doctors to be experts in all things medical, the truth is they are not, they often have little knowledge outside the area of their expertise.

Most doctors who treat a rare disease child may never even heard of, much less have any degree of medical expertise in, the disease at hand, including our GP and both pediatric and adult consultants.

My son is eight-years-old and the only child in the UK with Familial Cold Autoinflammatory Syndrome Type 2. It is a gene mutation which makes his autoimmune system stay on when it should have switched off, attacking his body – a lot of his life is in pain and is at times totally unable to walk. My wife has the same hereditary disease.

We have a brilliant working relationship with my son’s school. Whether his attendance is at 50 or 80 per cent (depending on his illness), we all work together to ensure that his education is kept up to date.

The drug is fairly toxic and had massive painful and traumatic side effects

We see medical professionals in Edinburgh on average twice a week, have appointments in London every few months. From the professors down, they tell us that in fact we are the disease’s experts and they take guidance from us.

Even before diagnosis we brought together hospital, school and family to ensure everyone is aware. At present there are five drugs which might help alleviate some of the symptoms. Four of those drugs seriously compromise the immune system and have extremely serious and painful side effects and are trials, used in other conditions, because the condition is so rare.

The least toxic one did no good. The second one caused his condition to seriously deteriorate. The third drug he tried after seven months deliberation, against our gut instinct. The drug is fairly toxic and had massive painful and traumatic side effects. It was our 34 days of hell watching our son going through so much pain and fear, watching his condition get worse, and dealing with his fear of us giving him the daily injections directly into the lesions on his legs.

Thankfully, the consultant agreed with us that enough was enough. My son, to this day a year later, still winces at the mention of the drug’s name.

What if our consultant changed and the new consultant wanted us to try a drug we were not happy giving to our son, or indeed try once again the drug which gave us our 34 days of hell? The legislation allows the consultant to contact the named person and promote said views without even consulting us. This is a fact and it is not open to discussion.

We go out of our way to enable everyone dealing with my son to work together, whether that be professors, consultants, GP, rheumatology nurses, physiotherapists, occupational therapists and all the other medical professionals and the educational professionals in school.

We make the time to ensure that every single minute of my son’s life is as meaningful and fulfilling as it can be. I am the named person and I can do it better than his head teacher or anyone else because I live with it 24 hours a day, 365 days a year I don’t take school holidays nor weekends off. I am with my son whenever and wherever he needs me.

No matter what trials and tribulations I go through with my son’s and wife’s condition, the one thing that keeps me awake at night is worrying about getting a new consultant or a new head teacher who tries to force my family down a path I don’t want to follow for my son’s treatment and I know I am not alone in my thinking.

(Previously published in the Scottish Sunday Express. Reproduced by kind permission of the author.)

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Jul 242015

The Scottish Government plans to appoint a teacher/ educator/ nurse to oversee every child born. The intent is ‘Getting it right for every child;’ the scheme is commonly known as the ‘Named Person’ scheme. Aberdeen Voice asked the agency responsible for the roll-out of the Named Persons scheme to answer some of the many questions surrounding this controversial scheme. Here are the questions and replies, as well as a few further questions. By Suzanne Kelly

Scottish ParliamentThe controversial ‘Named Person’ scheme is the subject of heated debate and discussion online and offline. The named person will follow a child from birth to age 18, looking at any records they wish concerning the child and its family, such as health, education, police; anything.

The intention may be a good one, to ensure that no child is abused. A number of questions were put to the government, and after a few weeks their spokesperson responded as follows:

Q1.  How do you square this scheme with the opinion of the Law Society, which warns that the move could be illegal under Article 8 of the European Convention of Human Rights (ECHR), which protects a parent’s “private and family life”.


“The legislation was recently the subject of a challenge in court, heard in November and December 2014. The challenges to the legislation were rejected in their entirety by the Court. The Court found that Part 4 (Named Persons) of the Act does not contravene the ECHR, EU law or the Data Protection Act (DPA).”

Q2.  Do you intend to compel children to answer questions?


No. As we have said before, there is no obligation for a parent, child or young person to engage with the Named Person. The legislation brings no new powers for teachers, or any other professionals.”

[At present there are strict laws governing who can access personal data; it is far from clear whether that protection will apply to Named Persons who want to look at files. While the answer says children will not be compelled to answer, it was presented in court that they will indeed be made to answer questions with QC Aiden O’Neil telling the court there is no provision for opt-out http://www.bbc.co.uk/news/uk-scotland-30935806 . Anyone who doesn’t want to answer questions, or any family that doesn’t want to participate should be made aware of the answer the government supplied here that says the scheme is not compulsory.]

Q3.  Will children be forewarned before they are questioned?  This apparently did not happen in at least one case.  In Aberdeen, a teenage girl was called out of her class and questioned by someone at first introduced as being a nurse.  She was unprepared and uncomfortable.


The Scottish Government cannot comment on individual cases.”

[The question was whether or not a person would be forewarned they are to be questioned. This was not answered.]

Q4.  The girl was asked questions about her period among other things. Is this sort of questioning what is being rolled out? Please send me a list of questions which children will be asked to answer.


“The Scottish Government cannot comment on individual cases. There is no list of questions.”

[If there are no set questions that can be published, then how can a child or a family possibly know what questions and what subjects are covered under this scheme? The absence of set questions leaves this sensitive questioning of a child open-ended, and can be seen as a carte blanche open to abuse.]

Q5.  A concerned parent wanted to know what had transpired and been written up as notes after their child was interviewed.   The local authority planned to charge £10 per page of documentation supplied – and also was arguing that neither parent or child was really entitled to see any reports created by a named person.


“The Scottish Government cannot comment on individual cases.

“The cost of requesting information held about you (known as a Subject Access Requests) is regulated by the Information Commissioner’s Office (ICO). Parents are entitled to access information about their child by making a SAR if the child is unable to act on their own behalf or has given their consent. Further information can be found here: https://ico.org.uk/media/for-organisations/documents/1065/subject-access-code-of-practice.pdf

[The costings provided in the document supplied seem very precise. They also seem very low. The scheme will cost central government absolutely nothing. It will cost ‘other bodies, individuals and businesses’ less than £700,000 from now through 2019, and will cost the NHS. The bad news is that these costs which are nothing short of eye-watering will fall on local governments. In 2014-15, local authorities are estimated (rather precisely) to have to spend £78,782,982 on the scheme (I wonder what happens if that rises to £78,782,990?). The figures then shoot up further, costing £107,765,588 the following year, and similar sums going forward. Will we see local authorities hiring squads of child watchers? It certainly looks like a possibility, as Page 47 refers to hiring administrators.]

Q6.  What powers does the named person have over the child?


The Named Person builds on the professional responsibilities of those individuals who are identified as Named Persons (such as Health Visitors, Primary Head Teachers and Guidance or Pastoral Care Teachers), and will form part of their day-to-day work. The Act does not introduce any powers over a child for the Named Person role.”

[Some teachers are less than keen to have any further work piled on them. I have also heard from parents of children with special needs who are currently in litigation concerning bruising and possible use of restraints on their children – the very people who are involved in the legal action would have been likely to also be the ‘Named Person.’ This is worryingly going to cause clashes and in such a case it is hard to see how allowing a Named Person access to records about the child’s bruising and police information which could influence legal action is in the child’s best interests.]

Q7.  What forms of records – school, medical, police, other – would a named person be allowed to look at?


There are no powers in the Act plans to routinely gather and share information, or records. If there is a concern about wellbeing then relevant public bodies will share information proportionately and if relevant to addressing a concern. The child or young person will know what is being shared, for what reason and with whom and their views will be taken into account.”

[This is somewhat reassuring – but how the scheme will be overseen and what checks and balances exist is unclear.]

Q8.  How much is your scheme estimated to cost at the national level, and how much at the local authority levels for Edinburgh, Inverness, Glasgow and Aberdeen?


“Information on the costs of implementing the Getting it Right for Every Child Programme of which Named Person forms a part, are contained within the Financial Memorandum of the Children and Young People (Scotland) Act 2014, available here: http://www.scottish.parliament.uk/S4_Bills/Children%20and%20Young%20People%20(Scotland)%20Bill/b27s4-introd-en.pdf

“The Scottish Government does not hold information relating to the cost for individual local authorities.”

Q9.  There are cases where children with special needs have returned home from specialist schools with injuries and legal action is being taken by parents. If the named person is also someone who might potentially be involved in abuse, what safeguards would be created to remove the named person from overseeing that child? What safeguards would ensure that such a person is banned from looking at medical, police or other records which could interfere with any legal action being taken by parents?


The workforce regulation will not change as a result of the Named Person. Anyone undertaking the Named Person role, such as Health Visitors and Head Teachers, will have already undergone a process of checks and vetting through the Protecting Vulnerable Groups (PVG) scheme which checks their suitability to work with children.

“The Named Person will be accountable within the management structure already in place for their primary role. They will also be accountable to their professional registration body as is currently the case. Parents and children will be able to hold professionals accountable through the complaints processes in place within agencies.”

[This may be reassuring to some, but as the news attests, there are educators and doctors who have been found guilty of abusing children, all of whom had been passed as suitable to work with young people.]

Q10.  How does the government plan to manage and record instances of named persons accessing a child’s records?  If the Data Protection Act 1998 is to be upheld, how does the scheme plan to manage doing so?


“Part 10 of the draft statutory guidance (available here: http://www.gov.scot/Resource/0046/00469613.pdf) outlines how the information sharing requirements of the Act should be met in a manner that is consistent with the Data Protection Act and the ECHR.”

My conclusions:

People have come out in support of the scheme. However, ‘Getting it right for every child’ seems to mean treating all children and families in precisely the same way under this new system. With data protection rights being breached with alarming frequency, coupled with no set questions and therefore no clear guidance about what it is appropriate to ask, will there be abuses under the plan?

The Act reads in part: “The Children and Young People (Scotland) Bill is founded on the key principles of early intervention and prevention…” Who is going to decide what ‘intervention’ is required? Who is going to be deciding that some future abuse or problem should be ‘prevented’, and how would this happen? Removal of the child from the family?

It is not so long ago that the shameful Orkney ‘satanic abuse’ scandal saw children being taken away from their families on the trumped-up charge of ‘satanic abuse’, questioned until exhausted under questionable circumstances, and when they begged to be allowed to go back to their families, their wishes went unheeded. Some of those forcibly removed children, taken for their own safety allegedly, wound up being abused when in care.

Some of these children sued the state for their lost childhood.

The state needs to clean up its own sorry systems before deciding it has the right to intervene and prevent. In the words of one of the Orkney children:

“We kept telling them that we had not been abused, but they wouldn’t listen,” she said. “The interview techniques used were designed to break us down.

“To take a child away from her mother at the age of eight is unforgivable. We were part of a normal, happy family and suddenly we were shattered.”  http://www.scotsman.com/news/scotland/top-stories/orkney-abuse-scandal-victim-to-sue-for-lost-youth-1-1139542

The state assumed it knew better than the families and the children then; it is assuming it knows better than the families and children now.

This is a contentious subject; there have seen some heated exchanges online; some people are assuming objections to this scheme must necessarily be motivated by anti-SNP sentiment. This leap of logic must not be allowed to overshadow the facts of what the government wants to implement. Objectors to the scheme include doctors, families, human rights groups and more.

For those concerned about the increasing encroachment by government on the rights of the individual, this scheme seems Orwellian. Indeed, we are going to teach children from the time they can talk that they are answerable to the State, not that the State should and must be answerable to them.

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