Talk to Festival of Politics on the Lives of Disabled Children in Scotland

The following is the text of the talk given by Zoe Picton-Howell, an English qualified solicitor, now resident in Scotland, as one of the speakers at the Scottish Parliament Festival of Politics event “Better Rights, Better Lives, Better Futures” in August 2009.  The event which was open to the general public, aimed to examining the impact of Scottish Devolution, ten years on, on the rights of Scotland’s Disabled Children.

(c) Zoe Picton-Howell

“1999 was a proud year for Scotland. A small nation with a strong tradition of social justice.  A nation famed for its staunch opposition to unfair policies, imposed by Westminster. A nation proud of its state education; its legal system and its National Health Service.  A nation where people mattered. 

In 1999 Scotland’s Parliament, which had adjourned 292 years earlier reconvened.  The Scottish people would now make their own laws in areas such as health, education and social care.  Even before 1999, Scottish Acts of the UK parliament often had a more social justice flavour to them than their English counterparts. 

The rebirth of the Scottish Parliament, a proud moment in Scottish constitutional history, was sandwiched between two crucial developments in international law for Scotland’s disabled children.  Ten years earlier in 1989 the United Nations adopted its Convention on the Rights of the Child.  This gave children worldwide, including in Scotland, numerous rights;   to education; to health care; to be listened to and for disabled children, in particular, a right to a full and decent life.  The Children’s Convention was ground breaking, the first international treaty to recognise disability as a human rights issue.

Twenty years later and ten years after Scottish devolution, this year saw the rights of Scotland’s disabled children enhanced further when the UK government, ratified the new United Nations Convention on the Rights of Disabled People.     

Sharing the jam in this momentous constitutional sandwich with the new Scottish Parliament was 1998 Human Rights Act. An Act to bring home the right enshrined in the European Convention of Human Rights.  Enshrining, for example, the right to life; the right to an effective education and the right to a family life into Scottish and English domestic law.  The Human Rights Act made it possible for the first time to bring a case in a Scottish Court based on an alleged breach of a European Convention article, avoiding going to Strasbourg to enforce Convention rights.

The Children’s Convention, the European Convention with the Human Rights Act and the new UN Convention on the Rights of Disabled Persons form a framework of international and European human rights law, protecting Scotland’s disabled children. 

But there is more. Scottish Devolution did not put an end to the protection provided by existing UK legislation, such as the Disability Discrimination Act. 

Scotland’s new Parliament also introduced new legislation.  For example, its Education (Additional Support for Learning) (Scotland) Act. It also created the post of Scottish Commissioner for Children and Young People. A post strongly advocated by Child Rights specialists worldwide.  The Scottish government enthusiastically adopted policies such as “Getting It Right for every child” aimed at improving every, including every disabled child’s life, in Scotland.  New child rights officers joined the Scottish civil service.

With this framework of international and European human rights law; with equally helpful UK and Scottish domestic legislation and policies, together with a strong public sector and a proud tradition of social justice, life for disabled children living in 21^st Century Scotland seems pretty good.  Everything suggests their rights are protected.

But, is this the world Scotland’s disabled children live in today?  Well yes, at one level, this is the legal and political world in which Scotland’s disabled children live.  Everything I have described does exist today. But sadly this is only part of the picture. 

Talk to any disabled child; any parent of a disabled child or any expert in child disability in Scotland and they will tell you a very different story.  A story of having to “fight” for the very basics.  A fight for health care; a fight for school places; a fight for respite.  No-one with an interest in Scotland’s disabled children has to dig very deep to learn of a world

·       where despite Scotland’s supreme civil Court judging that a lack of bathing facilities amounts to inhuman and degrading treatment in breach of the European Convention,  in most of the wards at both Edinburgh and Glasgow’s children’s hospitals, hospitals with international reputations for excellence, children with physical impairment have no access to bathing facilities;

·       where a bright child with physical impairment living in Scotland’s capital city cannot attend his local school because it will take two years for a stair lift to be installed;

·       where parents, children, young people or staff who appropriately raise concerns about breaches of disabled children rights are subjected to victimisation, bullying and abuse from public service managers;

·       where a disabled child is told she cannot join a local club, “in case the sight of her upsets the other children”;

·       where a hospital provides computers for children to use, but none can be accessed by children with disabilities;

·       where parents of disabled children are told their child will only have life saving treatment when needed, if an alert is placed on their child’s hospital file- the default and assumption being that parents would not want the life of their disabled child saved;

·       where £34 million provided by the UK government to provide support for Scotland’s disabled children, disappears without a trace with no apparent benefit to those children.

The discrepancy is clear.  The discrepancy is blatant. The discrepancy is unlawful.

In the words of the UN Committee reporting on the UK, including Scotland, last October, “children with disabilities continue to face barriers in the enjoyment of their rights, guaranteed by the Convention...”,

So why are the lives of Scotland’s disabled children so different from the ones envisaged by the law and policy drafters and from the lives they deserve?

They reasons are many, here are a few:-

Firstly, the Human Rights Act did a lot of good. It made it possible to protect European Convention rights in the Scottish Courts.  In theory helpful. In practice not so for disabled children and their families.

Human Rights cases are often brought by prisoners. For example, the bathing case mentioned earlier.  This is not surprising.  Prisoners have a familiarity with the law. Most parents of disabled children don’t.  To qualify all lawyers must study criminal law.  Few lawyers in Scotland have the knowledge to help families of disabled children.

 It is a rare parent who will want, let alone have the money, time or energy to pursue a public body thorough the Courts.  Parenting a disabled child is a 24/7 job, requiring far greater expenditure combined with far less opportunity for paid employment than parenting generally.  There is little or no time for normal life, let alone to embark on a legal action.

Prisoners are also unlikely to share the common fear of a disabled child’s parent of being wrongly labelled as “a trouble maker,” when raising legitimate concerns.

Additionally, the Scots are justly proud of their public services, increasing their tendency not to complain when things go wrong, even when they go very badly wrong. The onus must not be on families of disabled children to “fight” for their children’s rights, whether through the Courts or in other ways.  Disabled children’s rights must become automatic. Service providers must see it as their duty to uphold disabled children’s rights, not as happens far too often today, to fight the families standing up for those rights. 

This tendency is only made worse by many of the myths which have grown up around the Human Rights Act.  These myths are very damaging. They give a false view of rights and encourage the negative treatment of those who rightly assert their child’s rights.

One such case concerned a prisoner on the roof top protest being given Kentucky Fried Chicken, supposedly because this was his Human Right.  There is no human right to KFC.  What actually happened is that food was given to the prisoner as part of the delicate negotiations to end the roof top siege, to avoid injury to staff, the prisoner and others.  In many cases papers report ludicrous HRA claims, but don’t report that the claims fail.  Parts of the media have their own agenda when it comes to encouraging a negative perception of the HRA and the European Convention. The Convention effectively introduced a law of privacy into the UK.  A law, sections of the media don’t want. 

A 2003 report looking at the implementation of the Human Rights Act within the NHS showed that the managers of 73% of NHS trusts in England thought the Human Rights Act had no relevance to their work.  In a similar vein, when the Scottish Government conducted a consultation on the Children’s Convention a couple of years ago, a senior NHS manager, working in children’s services offered me her invitation to the consultation, telling me that child rights had no relevance to her work. 

These points lead to the same conclusion.  Training in child rights must become compulsory for everyone working with children and also for all lawyers and policy makers.

It is also pointless governments signing up to international Conventions or passing laws, without providing funding to give Scotland’s disabled children decent lives.  The United Nations Committee writes guidance, called General Comments as to how the Children’s Convention should be implemented.  The Scottish and UK governments would do well to act on this guidance.  The Committee tells States that funding for disabled children should be “ring fenced”.  The current Scottish administration entered a concordat with local government. This devolved power in many policy areas from national to local government.  It also stopped most ring fencing of funding- enabling the £34 m allocated by Westminster, mentioned earlier, to disappear without a trace.  The UN Committee says more about public spending. States should use the maximum resources available to meet their Convention obligations.  This does not mean, that the UK only has to recognise a right if it has sufficient resources to do so.  The Committee explains that the UK and other states must prioritize spending to meet the rights of children, including disabled children, over spending in other areas.  The Committee has said that the UK not only has sufficient resources to meet its own Convention rights, but is also well placed to help other states. Families with disabled children are frequently told resources are not available for their child. Whatever your political allegiances, you will no doubt be able to think of areas of public spending which could and perhaps under international law should, be redirected to fund Scotland’s disabled children’s rights.  

Finally, I would advocate a Bill of Children’s Rights incorporating the Children’s Convention into Scottish and English law.  The Scottish government says it will review the compatibility of Scottish laws with the Children’s Convention on a case by case basis.  This is better than nothing, but to borrow a phrase from Barack Obama “better is not good enough”.  All laws and policy must comply with the Convention, not just those the government has had the chance to review.  Moreover, it is crucial that laws are reviewed to ensure they meet disabled children’s rights.  A stricter test than just meeting children’s rights.

A Bill of Rights will increase awareness of the Convention and encourage public sector staff to receive training on the Convention.  It will also be an opportunity for the UK to rectify the Conventions weaknesses. Currently, when the Convention is considered, such as when the UK reports, roughly every five years, to the UN Committee, or for example, when the Convention was debated in this very Parliament earlier this year, disabled children are largely neglected.  Despite being some of Scotland’s most vulnerable children and despite facing far greater difficulty meeting their Convention rights, disabled children are still overlooked, forgotten or simply ignored. Partly this is due to the way the Convention is drafted.  There are also other reasons too numerous for me to discuss today. A Bill of Rights incorporating an improved, disabled child friendly version of the Children’s convention could rectify these shortcomings.  If Scotland gets it right for disabled children, Scotland gets it right for all children.

The Scottish government’s consultation on the UN Committee’s recent report on the UK was entitled “Are we there yet?”.  The existing framework of international Conventions, domestic laws and policies mean that disabled children have at least started on the road. But there is still a long journey ahead.  A devolved Scottish Parliament means that Scotland has its hands very firmly on the steering wheel.  Health, education, social services, to name a few, are some of the key policy areas which affect the human rights of disabled children.  All policy areas devolved to the Scottish Parliament.  A nation is judged on how it treats its most vulnerable citizens; Scotland through its devolved Parliament has the means to give Scotland’s disabled children “Better Rights, Better Lives, Better Futures”.  Let’s just do it.

Thank you

(c) Zoe Picton-Howell

August 2009

References

—  Quinn, Degener et al, “Human Rights and Disability”, United Nations, New York, 2002;

—  O’Neil, A, “Limited Government , Fundamental Rights and the Scottish Constitutional Tradition”, O’Neil, Edinburgh, 2008;

—  Keating, Stevenson et al, “Does devolution make a difference? Legislative Output and Policy Divergence in Scotland”, Journal of Legislative Studies, 9:3, 110-139, 2003;

—  Picton-Howell, Z,  “Do Children in the UK with Severe Disability have Human Rights?”, LLM Dissertation, 2008;

—  Office of the High Commissioner For Human Rights, General Comment No.9 (2006), The rights of children with disabilities, CRC/C/GC/9;

—  Office of the High Commissioner For Human Rights, General Comment No.5 (2003), General measures of implementation of the Convention on the Rights of the Child (arts.4, 42 and 44, para 6), CRC/GC/2003/5 ;

—  Rights of the Child UK - Rock coalition, see http://www.crae.org.uk/protecting/uk-law.html

An Open Letter to The First Minister Concerning Edinburgh Sick Kids Hospital

Dear First Minister

As you may remember you sent my young son Adam a wonderful letter last year congratulating him when he won his Brit Writers Award for his poetry.  Adam treasurers your letter, indeed it hangs in a frame next to his bed.

I sadly feel that I am left with no option but to write to you about another aspect of Adam's life, his health care.  I am writing to you an open letter and I am making the letter available publicly on a blog and sending it to certain national newspapers, because changes must happen.  I am aware that the concerns I raise in this letter are shared by others and are known about at the highest level both within the medical community in Scotland, if not further a field and politically, but they are being allowed to continue.  It seems only by putting this matter in the public domain is there any prospect of change.  I am aware that in putting this in the public domain I am also putting very personal information about Adam in the public domain and exposing our family to scrutiny and stress, but the problems at Sick Kids are so serious after seriously balancing up the risks and benefits and having faith in the goodwill and high ethical standards of the Scottish public (as we have witnessed since Adam received in his poetry awards), I think doing so is not only very much in Adam's best interest but also in the public interest.  Indeed, I feel by not making public the way Adam ( and I am aware of other children with serious health problems and severe physical impairments who have been treated in a similar way at Sick Kids) has been treated, I am allowing the disgraceful treatment to continue.

I am sure that like so many of us you were shocked by the scenes broadcast last Monday on BBC's Panaroma of the treatment of adults with learning impairments at the Winterbourne View Unit in Bristol.  I am sad to to be writing to tell you that at least some children with exceptional health problems and severe physical impairment are also subjected to inhuman and degrading treatment at Edinburgh's flagship Royal Hospital for Sick Children.  In my experience the abuse is different in nature from that experienced by residents at Winterbourne, but it is still very serious and a breach of not only the children's Article 3 ECHR (right not to be subjected to inhuman and degrading treatment) and Article 8 (right to family life, as widely interpreted by the European Court of Justice), but also a breach of Article 24 (right to the highest possible attainable standard of health and a treatment) and Article 23 (right of a disabled child to lead a full life and not to be subjected to discrimination) of the UNCRC, which is ratified by the UK and which your government is currently seriously considering making part of Scottish domestic law.

Of course, there are some absolutely wonderful staff at Sick Kids who give Adam wonderful care, but the pervasive culture is one of treating Adam with neglect and indifference, doing as little as possible, combined with treating parents who raise legitimate concerns in the appropriate way with hostility; aggression and threats, including writing to parents threatening to have the child put in long term residental care, if parents are unhappy with the care the child is receiving at Sick Kids.

Adam is now eleven years old.  I am able to compare the care (or sadly too often lack of it) he receives at Sick Kids with care he has received at Yorkhill, at Southampton General Hospital and also with short stay at Great Ormond Street Hospital.  At all the other hospitals Adam has always received the highest standard of care; all staff have treated Adam and my husband and I wonderfully.  Perhaps the biggest contrast is that at the other hospitals we are never ever conscious of Adam's physical impairment.  There is never any question that Adam should not receive the best possible care available because he is a disabled child.  At Sick Kids it is always an issue.  We are constantly reminded of his physical impairment.  We even have to have an alert on his medical notes that he should be resuscitated if he stops breathing, staff at Sick Kids seem to start with the presumption that parents of a child with severe physical impairment will not want their child resuscitated, rather than the presumption that they will.  Staff have also told me of blanket policies such as a policy that in the event of high demand, such as during the swine flu outbreak, children with severe disability will not be admitted to ITU, irrespective of their need.  As you are aware blanket policies like this are both unlawful and a breach of doctors' professional conduct.  An individual decision should be made in the case of each child on a case by case basis and children with physical impairment should not be discriminated against in this way. 

Adam has cerebral palsy and multiple life threatening health problems.  He has intractable seizures; he has autonomic dysfunction, which means for example he is unable to regulate his temperature and can not sweat; he is immune suppressed; has growth failure; requires 24 hour a day oxygen and has a trachestomy and has serious allergies and several other health problems.  Adam is however blessed in being educationally very bright; an active communicator ( he communicates by blinking) and as you are aware, having a great talent for writing poetry http://intheblinkofaneyepoemsbyadambojelian.blogspot.com/  He is also very interested in the wider world and very public spirited and is currently planning a fundraising ride on his supported trike for a national charity http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=adambojelian

Adam has had care in Sick Kids since he was 18 months old.  Indeed, he has spent over six years in total in that hospital.  Over the years there have been a numbr of incidents which have caused concern.  For example, when he contracted chicken pox while in Sick Kids.  He was on high dose steroids and hence immune suppressed.  He was on a "clean ward" where supposedly no one could be admitted with any infectious illness.  A child was admitted with chicken pox and placed on a ward close to Adam.  Adam inevitably caught chicken pox which resulted in him spending two weeks in intensive care on life support and requiring a number of transfusions.  He has been left with long term serious health problems.  He was also on a ward when immune suppressed on another occasion where a parent known by doctors to have influenza was allowed to stay with their child.  Indeed the doctors repeatedly told the parent not to come close to them so that they did not catch the influenza, but took no steps to protect the children in the four bed bay who were immune suppressed and all had serious health conditions from catching pneumonia.  Adam has acquired MRSA, Pseudamonas and several other hospital acquired infections at Sick Kids.

In January 2008 Adam had a trachestomy.  Previously medical staff had advised against Adam having an anaesthetic because they believed the risks to be too high.  They however advised my husband and I on this occasion that the risk was acceptable and the risk of complication was low.

Since the day of Adam's trachestomy Adam has had hypothermia nearly every day.  This clearly causes him great problems as he looses consciousness and when it is at its most extreme he stops breathing and I or nursing staff  if they are available, have to bag him using an ambubag.  As a result Adam is now unable to attend school for the majority of the year as he is likely to become hypothermic if the temperature is below 15oC, so most of the time in Scotland.  Prior to him having his trachestomy Adam did occasionally have hypothermia, but only when he was very ill for some other reason and very infrequently.  The trachestomy operation therefore seemed to have some how led to this change.  A number of weeks after the operation, when Adam was still in hospital I spoke with Adam's neurology consultant Dr. A about it.  We discussed reasons for the change and in the course of the conversation I asked her if she thought Adam could have suffered further cerebral damage during the operation which was now causing the near daily hypothermia.  Dr A said she thought this was unlikely as there had been no reports of anything to cause concern happening during the operation or any sign of a problem during recovery. She however, said she would look into the possibily further.

About half a hour after my conversation with Dr A, Adam's then respiratory consultant Dr B appeared at the door of Adam's cubicle.  He shouted at me "get it out of your head that we have harmed Adam, it is total nonsense, there is no way a trachestomy operation could possible do harm to anyone".  I was shocked and upset by this.  My conversation with Dr A had been an amicable one in which we had explored the possible causes of Adam's hypothermia in the hope of finding a solution, with no mention of blame.  Also Dr B rant was clearly unprofessional and a bizarre way to treat the parent of a sick child.  He was also of course wrong, as an anaesthetic is always a risk, particularly for a child with complex medical problems like Adam.

Our problems with Dr B did not stop there.  For two or more years up to January 2009 Adam had numerous emergency admissions to hospital, often blue light admisisons to resuss.  These admissions were combined with lengthy stays in hospital of weeks and sometimes months.  On each occasion following discharge Adam would be readmitted within days in acute respiratory distress, struggling to breath and needing 15 litres of oxygen.  Repeatedly we and indeed other staff at Sick Kids asked Dr B if there were any investigations which could be done which would prevent Adam going into respiratory distress in this way.  Dr B repeatedly said that no investigations were needed and repeatedly told us that Adam's lungs were healthy.  Whenever Adam was admitted in respiratory distress Dr B was eager to wean Adam off the oxygen he had been put on in the ambulance or in A&E as quickly as possible and if Adam's saturations dropped rather than putting Adam back on oxygen he would tell us or nursing staff to lower the limits on Adam's saturation monitor.  You can imagine the toll these repeated emergency admissions and hospital stays had on Adam and the rest of the family and indeed the cost to the NHS.

Eventually another of the Sick Kids consultants said to me quietly one day "I don't think Adam is getting appropariate respiratory care here, ask your GP to refer him to see a respiratory consultant at Yorkhill".

Adam was referred to Dr D a respiratory consultant at Yorkhill in January 2009.  Dr D did some basic investigations, such as a CT scan of Adam's lungs and a sleep study.  Indeed, the same simple investigations we and other Sick Kids staff had repeatedly asked Dr B to do, but he had refused.  Dr D discovered rather than having healthy lungs as Dr B had repeatedly told us, Adam had bronchiectasis http://en.wikipedia.org/wiki/Bronchiectasis . Dr D prescribed 1 litre of oxygen first just overnight and later 24 hours a day.  He also recommended early intervention with antibiotics when Adam had clear signs of a chest infection.  This contrasted with Dr B's approach, where Adam would be left for weeks with a chest infection without antibiotics.  Adam has continued to have his respiratory care at Yorkhill, which is obviously very difficult when we live in Edinburgh, but the difficulties are worthwhile when you see the improvement in Adam and his life.  Since January 2009 Adam's near weekly emergency admissions and prolonged hospital stays have stopped.  Adam went from living in hospital to not having a single inpatient admission in an eighteen month period.

The impact on Adam and our whole family has been amazing. Adam has excelled educationally, indeed this week he is starting mainstream school; he had shown his talent for poetry, for which he has now received a number of awards; he has been able to travel to London on a number occasions and has a good and happy life at home with his family, friends and pet dog Charlie.

Before Adam's respiratory care was transferred to Yorkhill we had other problems with Dr B and his team.  On one occasion when Adam was in hospital when I went in to see Adam he was very distressed.  A nurse who was also distressed spoke to me and explained why they were both distressed.  She told me that earlier in the day Dr B had conducted a internal rectal examination of Adam.  I later wrote to NHS Lothian expressing my concern that Dr B had carried out a rectal examination of Adam in a non-emergency situation without making any attempt to even ask consent to carry out the examination; doing so without giving my husband and I the opportunity to consider whether the examination was indeed needed, or Adam the opportunity for Adam to have his mum or dad with him if indeed the examination was needed, during what at best would have been a very uncomfortable and at worst painful and distressing internal examination.

I asked that Dr B write a letter to Adam apologising for having conducted the examination without even trying to gain consent and without giving Adam the opportunity to have someone with him if the the examination was needed.  I also asked that Dr B apologise to me and my husband for not seeking our consent and asked for confirmation that Adam would not be treated in this way in future (Dr B still sees Adam if he is in Sick Kids).  I felt it important that Dr B acknowledge that his conduct was unacceptable and wanted to make sure Adam would not be treated in this way in future.  The way he behaved was certainly a serious breach of professional conduct and possibly amounts to an unlawful assault.

NHS Lothian replied simply confirming that Dr B had conducted the examination.  They gave no apology for his failure to seek consent and no confirmation that Adam would not be treated in this way in future.  NHS Lothian attempted to justify Dr B's conduct on the grounds that he is well regarded by his colleagues, although this clearly does not excuse him from acting lawfully or professionally.

This is not the first time a concern raised about Dr B has not been dealth with by NHS Lothian.  After Adam had his trachestomy and before  his respiratory care was transferred to Yorkhill, Adam developed an infection around his trachestomy.  It appeared to be serious as it was red, swollen and pusing and a rash spread eventually covering his whole face.  We repeatedly took Adam to Sick Kids to get the infection treated.  We were particularly concerned because Adam is immune suppressed.  We saw various members of the respiratory team on our visits.  The respiratory registrar prescribed a topical cream and told us to apply it to the infected area including "inside the trachestomy".  I asked her if I correctly understood her, as it seemed strange to me to be asked to apply a topical cream marked "for external use only" inside a stoma, but she confirmed that I had understood her correctly.  The infection did not improve and we took Adam back to Sick Kids several times, but each time were dismissed as if we were just making a fuss about nothing.  Finally in despair and because we were seriously concerned about the infection, we took Adam 50 miles to A&E at Yorkhill.  Staff there were equally concerned by the infection particularly as Adam is immune suppressed.  They admitted Adam as an in-patient and put him on strong IV antibiotics and the infection cleared up.

After this experience we wrote to Dr B expressing concern at the care Adam had received at Sick Kids from members of his team. Dr B telephoned me and promised to meet me the following week to discuss my concerns.  No meeting ever took place.  I chased the matter over several months with a member of staff in NHS Lothian's patient liasion office, who is always very helpful and also does his best to try and resolve any problems.  He was repeatedly told by Dr B that the matter had been resolved (it had not).  Dr B also told him that a meeting had taken place with staff from the voluntary organisation Special Needs Information Point "SNIP" present.  SNIP staff tell me no meeting took place and they would never meet without first obtaining a parent's consent.  Eventually I gave up chasing the matter.

We had on going problems for many years, as did other parents in a similar position, with Adam's home nursing care.  Even after the Scottish Public Service Ombudsman found in Adam's favour concerning the matter and NHS Lothian gave the SPSO an undertaking that Adam's home nursing care would only be provided by registered nurses as his serious health concerns required, NHS Lothian managers repeatedly tried to withdraw his nursing care.  When we and other parents approached MSPs with our concerns, NHS Lothian wrote to MSPs giving totally false information, for example saying that Adam did not have serious health problems and only has "normal childhood illnesses" ; that he was well and attending school regularly (at a time when ill health had prevented him from attending school for many months); and making totally untrue allegations about the the parents who had raised the concerns.  Thankfully now a senior manager Mrs E has taken over the senior management of this issue and her approach had brought significant improvements. for all concerned.

A senior nurse manager also previously asked me to sign an agreement that I would not contact any third party such as a MSP or the SPSO about Adam's treatment at Sick Kids (I refused to sign it).  NHS Lothian managers also intercepted and read emails I sent to the independent parent support organisation SNIP about the problems we were having and intercepted and read emails I sent to the hospital chaplain.  This was discovered by staff at SNIP who came to see me one day when Adam was in hospital and told me what they had discovered. The managers also intercept emails sent to Adam's medical team containing confidential medical information about him. NHS Lothian continue to intercept emails I send to any of these parties.

More recently Adam was admitted to ward one of Sick Kids  on 14th February with pneumonia and was found on admission to also have influeza B.  I was with Adam on Monday 14th and Tuesday 15th, but then became so ill myself that I had to stay in bed for the rest of the week.  My husband spent what time he could with Adam in hospital but was greatly constrained by work commitments.

On Friday 18th I was woken by a phone call when I was ill at home in bed from the ward one Charge Nurse F.  Nurse F told me that Adam was now better and asked whether I would prefer Adam to come home that day or the next day.  I was very surprised to hear that Adam was better as the recovery seemed remarkably swift for him in the light of how unwell he had been earlier in the week.  I was also shocked that Nurse F was suggesting Adam be sent home when Nurse F was aware that I was very sick in bed and clearly not fit to look after Adam.

When my husband arrived at ward one later that day he found Adam had been moved out of the cubicle where he had been receiving care next to the nurses desk, to a cubicle at the end of the ward (off the main part of the ward) where he could not be observed. He was extremely concerned that Adam had been moved to location where he could not be observed by nursing staff, despite his multiple and complex health problems, many of which are life threatening.  When he went into the cubicle my husband found Adam had a high temperature but was in bed located right next to the radiator which could not be turned off or down.  This was a very dangerous situation for Adam to be placed in as he (as hospital staff are well aware) is unable to regulate his temperature.  Hospital staff told my husband that Adam was better and ready for discharge and asked him if he wanted to take him home that evening or the following day.  He did not think Adam looked at all well but did not feel able to challenge the decision to send him home as it was presented to him as a fait accomplie.  As my husband did not think Adam would be safe spending the night next to a radiator pumping out heat when Adam already had a high temperature, he said he would take Adam home that evening.  My husband also did not think Adam was well enough to travel home without nursing assistance and one of Adam's home care nurses was on duty on Friday evening, but no nursing cover is available for Adam during the day at weekends.

The home care nurse has confirmed that she also was extremely shocked that Adam was being discharged.  She said he clearly looked unwell, that he had an exceptionally high temperature for him and that his respiratory rate was in the 40s (it should be about 16).  She also said she felt unable to express her concerns as hospital staff were so insistent that Adam was well.  She said even as ward staff were waving Adam off the ward he was very clearly struggling with his breathing, but this was totally ignored by the staff.  She also says that she was absolutely terrified caring for Adam at home, with none of the back up available in a hospital overnight.

On Saturday I was able to get out of bed and saw Adam.  He was very clearly very seriously ill, requiring high flow oxygen, with a high respiratory rate and with a high temperature.  I phoned ward one to express my concern and asked which doctors had said Adam was better and ready for duscharge.  She was told that the decision had been made by Dr G, Dr A and Dr H.  Dr A and Dr H are
neurology consultants so I am at loss as to why they made a decision to discharge a child admitted with a very serious respiratory condition.  Dr G is not a name with which we are familiar, so assume it he or she is not a doctor who has had much
involvement in Adam's care.

I called an ambulance on seeing how ill Adam was.  On seeing Adam the paramedics were also shocked that Adam had been discharged the previous day, as it was obvious at first sight that he was clearly very ill.

Once Adam was in resuss at Sick Kids we asked that he be transferred to Yorkhill as his respiratory consultant is based there and he clearly had not received appropriate care during the previous week.  However, Adam went on the have severeal apneoas and we were
told he was too ill to transfer to Yorkhill.  The following day Consultant Dr I  again told us that Adam was so ill that he would not expect him to survive the journey to Yorkhill, even with full medical support.  Blood test showed Adam had a very serious infection.

It is very clear that Adam was discharged from hospital on 18th February when he was very seriously ill and when he should have been receiving appropriate care in hospital.  But for my vigilance, willingness to challenge doctors' wrong decisions and sense
to call an ambulance on the Saturday when she saw Adam's condition, it is very clear sending Adam home when he was so seriously ill could have led to his death.

I wrote to NHS managers via the patient liasion office on 14th March to express my husband and my concerns at this treatment.  Although NHS Lothian say complaints will receive a full response with 20 days, I only received a full response yesterday and only after I told NHS Lothian that if I did not receive a full response by tomorrow I would send copies of the relevant correpondence to the SPSO.
NHS Lothian deny that Adam's discharge on the 18th February was anything other than appropriate.

Most recently on 24th April, Adam became ill late at night while at Rachel House children's hospice, where he was having a short holiday.  His temperature was 39oC (his normal temp is 35.8) I do not recall Adam ever having such a high temperature in the past, other than when he had severe dystonia which he did not have on this occasion.  He also had a heart rate of 200 for a hour and had constant seizures.  Rachel House spoke to staff in A&E and on their advice an ambulance was arranged to transfer Adam to A&E at Sick Kids.  We arrived at A&E and Adam was admitted to the resuss room.  A nurse took Adam's temperature which was then in the high 37s, a known sign of infection for Adam.

Adam continued to have constant seizures.  We were left in the resuss room with Adam with no staff and no further observations of him were made by staff.  After almost a hour I enquired whether a doctor was available to see him and a doctor came to see him.  She
said she had not been told of his temperature, heart rate or seizures.  The doctor examined Adam which took at most 15 minutes and took bloods and we were then left alone with him with no further observations undertaken.  Adam continued to have constant
seizures throughout this time.  Just before 6am we were admitted to Ward One and after handing over to the nurse, my husband and I went home to catch up with some sleep.  We woke and phoned the ward at just after 11.30am to ask how Adam was.  We were told someone would phone back.  Some 20-30 minutes later a register, Dr J, a registrar phoned back.  He told me "Adam had been well overnight".  He further told me that he examined Adam and that Adam appeared to be completely well and he could find nothing whatsoever wrong with him. (A curious observation for a doctor to make about Adam).  He said he had arranged for Adam to go back to Rachel House, but was having difficulty arranging transport so asked whether I could come in to drive Adam back up to Rachel House.  I was shocked by what I was being told.  A doctor was telling me Adam had been well overnight when he had been admitted from Rachel House overnight precisely because there was serious concern about his health, with high tachycardia (heart rate) and temperature and Adam had had constant seizures from 11pm till 6am.  I was also shocked that a doctor had made arrangements for Adam to return to Rachel House without so much as asking us whether we wished Adam to return to Rachel House.  Rather than Adam's mother, with whom as a matter of professional conduct doctors are required to work in partnership with,  I seemed to be being treated as nothing more than a taxi service.

My husband and I immediately went into the hospital.  On arrival at the hospital we found Adam in bed and hypothermic.  We also looked in his nursing notes and saw that his temperature had not been taken for almost four hours, despite him having a protocol
agreed with the ward one Charge Nurse F that his temperature should be taken a minimum of every two hours, due to his inability to control his temperature.  We also noted that when Adam's temperature had been taken it had been above 37oC, a known
indication of infection for Adam.  When we spoke to the nurse caring for Adam she told us she had never cared for Adam before and that no one had handed over to her anything about him; about his normal temperature range or his medical needs.  This is clearly totally unacceptable.

We also spoke to Dr J again.  We expressed our surprise that he had told us that Adam was well when his temperature had already been recorded at a level known to be a fever for Adam.  He then back tracked on what he had said earlier and acknowledged that Adam did indeed have signs of infection.  He did not explain why he had earlier told us that Adam was completely well.  He said that he had cared for Adam many times in the past and "knew all about his medical problems".  Neither my husband nor I have any recollection of ever having seen him before on the many occasions Adam has been in Sick Kids, so question just how well he does indeed know Adam and his medical needs, particularly as he had clearly overlooked clear known signs of infection in Adam.  He had also overlooked the fact that being on high dose steroids, even when ill, Adam will not have a high white blood count.

I wrote again via patient liasion to NHS Lothian manager about this admission on 28th April and they responded in the letter received yesterday.  To be frank their reply beggars belief.  They say that Adam was monitored constantly through out his time in A&E.  He was not even put on the hospital monitors, he only had on the monitor we put on him from home and no staff looked at the monitor during the time Adam was in A&E.   They also say the nurse "recalls checking on Adam on several occasions".  She did not.  My husband and I were with Adam for the whole time (three hours or more) the nurse took a temperature on his arrival then left the room; the doctor examined him for about 15 minutes and the nurse did some checks just before he transferred to the ward at about 6am.  No other observations or checks were conducted.  The letter also says "the nursing staff did not feel Adam was having sustained seizure activity and appropriately did not express concern regarding this to Dr K".  Adam was having constant seizures.  We have cared for Adam for nearly 12 years and know when he is having seizures.  We told the nurse that Adam had been having seizures constantly since 11pm at arrival in A&E, as did the nurse from Rachel House who had travelled down with me and Adam in the ambulance and the ambulance crew member.  Adam continued to have seizures for the whole time he was in A&E.

These are just some of the many incidents where Adam has had less than acceptable care at Sick Kids and where without doubts staff have acted in breach of his ECHR and UNCRC rights and in breach of their professional duties and domestic law.  Being a parent of a child with complex medical needs and involved with voluntary organisations which support children and families with disabilities and as I am a solicitor by profession (non practising due to Adam's care needs) I am often approached by other parents in similar circumstances, so know Adam and our experiences at Sick Kids are not isolated or unique to us.  As I said earlier, we also have experience of wonderful, appropriate and supportive care for Adam at Yorkhill and in other NHS hospitals, so know what is happening in Sick Kids is very different from what is happening else where.

Action must be taken urgently to ensure that Adam and other children receive the high standard of care available elsewhere at Sick Kids.  The poor care and abuse must stop, as must the attrocious way staff treat the parents who work so hard to care for children who need very demanding care, far beyond that required normally of a parent.

I trust that now this has been put in the public domain urgent steps will now betaken to address this unacceptable culture of indifference and neglect at Sick Kids and to ensure Adam and others receive the first class care provided elsewhere.

I look forward to hearing from you and hope that you and Ms Sturgeon will together ensure that my wonderful son is no longer subjected to inhuman and degrading treatment from people paid and trusted by the Scottish people to care for him.

Thank you for taking the time to read this letter.

Yours sincerely

Zoe Bojelian