Warrior Mum - Sophie Sleep's Journey

Sophie Sleep is the mother of four children (two with ME) and has been one of our greatest warrior mum supporters. Today I am delighted to feature Sophie's story, in the last of our warrior mum series. 

We will be back in December. 

"Sore throat, headaches, multiple aches and pains, joint pain, disabling fatigue, dizziness, pins and needles, numbness, light and noise sensitivity hot and cold intolerance, nausea, post exertional malaise, incredibly weak, tired heavy legs body, painful feet sweats, breathless pounding heart, the list just goes on. Heartbreaking to watch your once healthy, care-free, happy go lucky child, who was one of the fastest runners in school, who loved swimming and looked forward to cricket, to not being able to do any of the activities."

SOPHIE'S STORY

Firstly I would just like to thank you Michelle for giving myself and my family a voice. I feel very honoured. 
M. Thank you Sophie and welcome to Warrior Mums! 

Mum and Dad

I was born in Torpoint Plymouth on 25th November 1970. My mum Sylvia born in Plymouth and my dad Felix, who was in the Navy, was born in Trinidad and Tobago. 

Although my sister Natalie is two years older than me, I have always been the one to stand up for her when she was bullied at school. She had a virus when she was a baby that attacked the main nerve of her eye giving the impression it was a squint. Many operations were performed to correct it but the last one went wrong and left her with a closed eye. Kids can be so cruel.

Natalie, Mum, Sophie and Dad

We went to Torpoint Primary school then, when I was nine, my dad left the Navy and we moved into Plymouth and a new school. I had an awful scary teacher called Mrs Poole. She used to pull us children off our chairs and throw things at us and we were all terrified of her.

I never really liked school but did my best and couldn't wait to leave.

My first paid job was as a junior in an accountants office, where I was the receptionist, typist, answered the switchboard, did the accounts invoicing etc, in fact most jobs office work entailed, and I loved it. I continued with various office jobs over the years and when I was 23 I met Roger, my soul mate, my best friend, and my rock. We had only been going out for about 6 months when I moved in with him. Today we are still living in same house.

Roger and I got married on 14 February 1996. I was two months pregnant with my first baby. I carried on working until I was 8 months pregnant and not long after the company I worked for folded.

We have four lovely children.

Lewis, Arron, Hayley and Chloe

Lewis Nathan Sleep was born on Sunday, September 15^th 1996. My precious little boy was born a quick frightening birth; he came out blue with the cord was wrapped around his neck. The attending midwife was young and I could tell she was scared so that made me worse, then the crash team arrived as my son was not breathing. My dear Roger, bless him, was really scared too. I have never screamed through fear like that and he was there for me holding my hand and telling me everything was okay. 

Hayley Samantha Sleep was born at home on a hot sunny afternoon on May 10^th 1998.  It was so relaxing being at home in my own surroundings, just Roger me and the midwife. Like Lewis, my precious baby daughter was a quick birth, 2 hours and 45 minutes.

Arron Matthew Sleep was also born at home on the morning of Saturday 22nd April 2000. An even quicker birth than my previous two! We had one midwife in attendance and by the time another midwife turned up I had had my precious little boy. Unfortunately the cord was also around my son’s neck and it was a very scary time as the midwife was desperately trying to get the broken oxygen mask sorted out. It seemed like forever but it wasn’t thank goodness and Arron started to breathe on his own.

Chloe Louise Sleep, another little precious daughter, was born at home on Thursday 25th October 2001. Chloe was also a quick birth - an hour and a half in total. Chloe’s birth was straight forward and at home another joyful experience, and my last baby.

M. Would you please tell us about how your son, Lewis, was struck with Me.
Lewis first became ill in July 2007 two months before his 11th birthday. He started with an upset tummy and backache, temperature fatigue and generally feeling really ill. One Friday night after returning home from a cricket club my dad had taken him to. He became really poorly and wasn’t well the next day either. He perked up on the Sunday, but then went down again, managed to play a few cricket matches, but then just became far too unwell to do anything. As the weeks and months went on he just became more and more unwell.

 Sore throat, headaches, multiple aches and pains joint, pain disabling fatigue, dizziness, pins and needles, numbness, light and noise sensitivity hot and cold intolerance, nausea, post exertional malaise, incredibly weak  tired heavy legs body, painful feet sweats, breathless pounding heart, the list just goes on. Heartbreaking to watch your once healthy, care-free, happy go lucky child, who was one of the fastest runners in school, who loved swimming and looked forward to cricket, to not being able to do any of the activities. All the walks we went on as a family stopped, swimming, running, cycling, cricket, going on journeys everything was just too much. Unless you have a loved one with this dreadful illness it’s hard for people to understand just how debilitating and devastating it is. Our precious son who we love with our everything - WHY HIM?

 

The primary school he was at could not understand how ill Lewis really was, I used to get comments like “Well he seemed fine yesterday” the school were not helpful and neither were their comments. This for us as parents was extremely upsetting because we could see how ill Lewis was, why couldn’t they? ME is evil it took over every aspect of Lewis’s life. His schooling for the past seven years has been at home because he’s been too ill to attend main stream school. He had two home tutors, Sue and Roger Bunce. They were supplied through the Outreach Hospital School and together with the Headmistress, Mrs Jones were very kind and understanding during the two years they taught Lewis, from age 11-13.  I used to collect home work from the Primary school on a Friday (until Lewis’s school changed to the Secondary) and what work Lewis could not manage with the tutors, I would sit and do with him when he was able. I had to cancel a lot of lessons because he was just too unwell to do them and the times he struggled though often left him exhausted and in pain. 

M. Was it difficult looking after a sick child and at the same time trying to meet his formal educational requirements?

We had regular meetings with officials at home, which were very stressful for all of us. The schools were trying to pressure us into sending Lewis back to mainstream, but my son was seriously ill, why did they not understand?

Unable to attend Secondary school when it came to choosing his options for GCSE as they do it in year 9, I was called in for a meeting. In order to study for these exams Lewis would have to be on the school site for at least 25 hours per week and as this was not possible the school had suggested that a better option would be online lessons. I had already made enquiries about online education and had contacted The Tymes Trust, a charity for children and young people and their families with ME. Through my enquiries I heard about Nisai Virtual Academy and spoke to a very helpful mother whose child also suffered from ME and used this online teaching system. 

The hospital school headmistress met my suggestion of online schooling with enthusiasm and asked me to find out whatever information I could. I called the Academy direct and Lewis and I had a tour around the virtual classroom. Lewis was coming up to 13 then. We had to get letters from our GP, the same GP whom I have had since I was a child, while Lewis was on the waiting list to be seen by a Paediatrician, for their records when he was in primary school which was a five minute walk down the hill.  

When Lewis was first seen by a registrar at the age of 11, his last year of primary school, it was mentioned that he was presenting with Chronic Fatigue. He was then seen by a Consultant Paediatrician, a lady and mother herself, who did many blood tests, an ultra sound on his tummy and an MRI to see if she could figure out what was wrong with him. Then, about nine months later, because Lewis's fatigue had continued and his symptoms which are used to make the diagnosis, she diagnosed him as having Severe ME. After all this time the diagnosis was a relief, however, little did we know how much worse Lewis would become or the heartache we would all be put through.

M. And then there was the suggestion of help and advice from an ME expert. Was that a positive experience?
At a consultation, it was mentioned to us that there was an ME expert who may be able to help, so we asked if she would be able to make a home visit as our son was too poorly to travel. We so wanted to get our Lewis well again. A home visit was arranged and ME expert came to our home. Lewis was given a regime to follow known as the Traffic Light system, and after four days of Lewis doing this Graded Exercise therapy he dramatically went downhill, to where he was before but worse. He could not manage this anymore so had to stop. 

We also attended Child and Adolescent Mental Health Services (CAMHS) as a family. The other therapy for ME is CBT (Cognitive Behavioural Therapy). The therapists offered advice and after a couple of visits signed us off. It was obvious to them that we were doing all we could at home. 

A week after our home visit from the ME expert we were due to go back to the Paediatrician. Roger could not get time off work so my mum came with me. She and my dad were also very concerned as they could not believe how quickly Lewis had gone downhill after seeing him only two weeks before. I stupidly did some research on the ME expert after Lewis had seen her and took the information into the Paediatrician. Lewis told her how much worse he felt and that he had to stop as did I and to how frightened we were that he had relapsed so quickly. My mum then asked whether Lewis may be on a clinical trial. The Paediatrician hit the roof. She really had a go at my mum and told her our written permission would be required to do that. I then asked her how she expected us to have faith in experts when they don't listen to parents when they say their children are worse after certain treatments. She did say that she could see it hadn’t helped Lewis and that we were right for him to have stopped it. She also said she felt awful for getting the ME expert involved in the first place and for Lewis to carry on as before, basically doing what he felt he could do. The Paediatrician said she would contact the ME expert and tell her that it had not helped Lewis and that her services were no longer needed (not that we have ever seen any paperwork of this).   

Our relationship after this was not the same. She helped with letters for school and DLA, but we know that discussions were done behind our back with the Primary school and the Paediatrician because they were always suggesting Lewis should try more hours or go in to school etc. when he wasn’t even coping with his present work load. They did not see what happens to him when he tries to do more than he's able. He does not go out with his friends, they come to the house every now and then. Walking is very hard due to how his ME affects him and he has to be driven everywhere. He is not the same as his friends, they can stay up all night playing on their game consoles or go to parties, walk, cycle, play football etc. Everything he should be able to do he can’t due to this evil illness. Lewis was diagnosed as having Plantar factitious of his feet, policeman’s heel and Raynaud hands and feet, also Bilateral forearm pain last year, so more to add to his condition. We always have to plan ahead if we go out when he feels well enough too. It is very difficult for Lewis as it is for us as a family watching him struggle, our lives have changed to a different one, of accepting, being realistic, and making the best of life as he is now in his seventh year of having ME.

Lewis has for the past 5 years been doing on line school with reduced hours he was studying English and maths passed both with GCSE Equivalents doing 4 hours a week split into half hour sessions, a huge achievement considering he is ill.  Last year he did level 1 ITQ two hours on line half hour sessions and he started Level 2 this September. I help Lewis when he needs me to from spelling, proof reading, and talking and discussing ideas etc occasionally in the past I have typed for him when he was too exhausted to. Along with other help that Lewis needs for everyday living to cope with his ME. This for Lewis is a huge struggle and does impact on his health but he has the determination and drive and succeeds. We are extremely proud of him.
 

M. You must have been so shocked when Arron presented the same symptoms as Lewis?

Arron, like Lewis, was a very happy go lucky little boy, he loved swimming, riding his bike and his scooter, running, walking, all things that children of his age enjoy. This all became too much for him and still is now. Arron became ill after a viral infection, chesty cough, cold, temperature, runny nose, that he and his two sisters had in September 2009. His sisters got over theirs within a week or so, but Arron’s just continued on.

He became more and more unwell presenting similar and often the same symptoms as Lewis. His chest and back were the most scary; he had terrible stabbing pains in his chest and felt breathless dizziness/disorientation, pins and needles and numbness. His whole body so very weak and like Lewis, unable to sustain very much at all and both boys had streaming eyes.

Please we thought don’t let this be happening to our Arron but we knew the longer he was ill that something was not right. We hoped and hoped that Arron would just get well.  We asked the same Practice GP who had seen Lewis, my GP, if Arron could be referred to the same Paediatrician due to the fact that he was presenting similar to Lewis.   

Arron was diagnosed at first as having Post viral Fatigue by the Paediatrician, then, because his fatigue and symptoms continued was then changed to Chronic Fatigue Syndrome which is also written as CFS/ME or ME/CFS moderate to severe. This was so upsetting for Arron. For us, having one son with ME was devastating but two? Our world just fell apart.

Arron became more and more unwell, school became a big problem, he was not able to sustain even an hour and in the end it just made him more unwell. Primary School were not happy about this and when Arron did go in, a teaching assistant told him that he was okay and that he was just copying his brother! How dare she? What gave her the right to say that to my son?

As with Lewis, Arron was too unwell to go into school so a home tutor was set up through the hospital school. Arron's tutor would come in for 2 -3 hours a week and he was so poorly, to poorly for lessons, but had to try and learn regardless. On one occasion I went in to see his tutor and Arron had his head on the table and was crying. The tutor did not even notice as she sat marking work that I had done with him. It really upset me. His colour was terrible so he went and lay down on the sofa and even though the tutor expected him to continue after his rest, he was unable to. Arron was so poorly, I had to regularly phone and cancel out his home tutor, he would get so stressed at the thought he had to sit and try and learn when he felt too ill.

I would collect work from the primary school on a Friday and return work that Arron had managed to complete with me. The Hospital school where the tutors came from was going to change its name and the lovely headmistress Mrs Jones, was going to retire, before she did she set up for Lewis to do his on line learning through Nisai Virtual Academy and for Arron’s hours to be cut from 3hrs to 2hrs as he could not access them because he was too ill. Then two months later after everything had been sorted out, another meeting was called with the deputy head of the hospital school (stand in Head), as Mrs Jones had retired, I had to go down to the school. I went alone as I thought it was just routine, because everything had been put in place two months previous. How wrong was I? I went in and was totally on my own, I was bullied and felt very intimidated by the way I was being spoken too.  It was awful, the deputy head from the hospital school was going on at me, telling me how Arron could go to what was a Pupil Referral Unit (not for sick kids is for school refusers etc.) or to the hospital school room, both would have involved travelling, having to get dressed and using more energy that he was already lacking in this would also exacerbate his ME, so why go there when his primary school was 5 minutes down the road? I was told that Arron was socially isolated because he could not see his friends, however, he was too ill to see friends, but we made sure that he did when he could, the headmaster of the primary school was also pressuring me kept going on about having a CAF meeting, one was not needed as we were coping, it seemed hard for them to grasp this. Arron’s teacher from the primary school was also present however said very little, but the home tutor upset me too, she had seen how poorly Arron was, she just sat there and said nothing. I felt very hurt and let down by the whole experience. I even phoned the hospital school to complain about the Deputy Head of the hospital school who had come to the meeting but there was no one to complain too as he was the acting head. I told him how upset he had made me and that I found him intimidating, he apologised and said that was no his intention.

Once I had calmed down from being so upset, I phoned and spoke to the tutor and got my point of view across to her at how she had let us down, however she was welcome to come back to tutor Arron. She apologised when she saw me about what had happened at the meeting. She continued to see Arron even if it was only for 5 minutes, she would then spend the rest of the time with me going through
work to make up her hour. She then worked with Arron until he changed over to on-line school. She wrote a lovely end of school year report about how well Arron had done even though he had been quite poorly throughout the school year. Also mentioned  was if it had not for been for my help, Arron would not have done as well as he did and that my work made a significant contribution to Arron's education. This was lovely of her to write and I really appreciated her support.

M. And then to top it all you began to have concerns about your daughter. Can you share that with us?

From when Hayley was a baby she was always very clingy, then, when she started pre-school it took her a long time to settle. Then when she started Primary school we had lots of issues due to the fact that the teachers thought that Hayley was just shy. She would not speak and in class would nod her head. This was a huge challenge for Hayley going to school everyday, she suffered with constant tummy aches later diagnosed with IBS and was always anxious. It was awful trying to get her to go to school she would have terrible meltdowns, understandably.  I knew as a Mum as did Dad that this was not just shyness, at home she was noisy where she felt comfortable. Hayley always suffered with tonsillitis. She had to have both her tonsils and adenoids removed, and always had glue ear. (A condition where the middle ear fills with a glue-like fluid instead of air causing dull hearing. An operation to clear the fluid and to insert grommets may be advised if glue ear persists.)

Hayley has had 6 grommet insertions since she was six. I pushed for her to see the school nurse and because Roger and I were with Hayley and the nurse came in after, Hayley spoke to the nurse but in a very quiet voice. The school nurse said that if we were worried to get her referred to Speech and Language, which we did. In 2005 at the age of 7 

Hayley was eventually diagnosed with Selective Mutism, which is a a complex childhood anxiety disorder characterised by a child's inability to speak and communicate effectively in select social settings, such as school. These children are able to speak and communicate in settings where they are comfortable, secure, and relaxed. It is classed as a ‘Hidden Disability’ and is very debilitating. 

Hayley found school extremely difficult. The teachers did not understand and instead of showing sensitivity and support, kept spotlighting her in front of all the class to answer questions. I had to keep speaking to these teachers who thought Hayley was being defiant. Speech and language became involved but still particular teachers thought they knew best, then, at a later date I got a GP to refer Hayley to CAMHS for help for Hayley, and for the school to approach with a more supportive attitude. So as you can imagine we had many battles including with the Ed psychologist, who did not understand Hayley’s condition either.

We never wanted any of these conflicts. We were trying to help our daughter.  Then we had some issues at her Secondary school, same sort of problems, and we fought as parents to get Hayley a Statement of Special Needs and the SENCO, after a while, did start to understand Hayley’s condition a bit.

Hayley today

And this is the lovely Chloe

The reason I have discussed Hayley in this story, which is essentially about my sons ME, is because of what happened to us in 2011.  

At Lewis and Arron’s Clinic check up with their Paediatrician, I had asked her for help with DLA for Lewis. She agreed to help as she could not understand how one brother could get it but not the other. Lewis by this time had been doing his online school from the September of 2010 and it was going well for him. The great thing about this online school is that it is recorded so if too poorly to go to the live lesson, or ill during, they can catch up when they feel more able. All this in the comfort of their own home. The Paediatrician had commented and wondered if Arron could perhaps do the same online school, I had said yes he could but would need her to help with this, as I had already enquired about it, because Arron was due to start secondary school in the September of 2011 and the work to keep up with for me to try and teach him especially maths, I would not of been able to do. There was talk that the Hospital school may not be having home tutors anymore. Both Lewis and Arron were asked about whether they wanted to talk to someone CBT, (Cognitive Behaviour Therapy) both declined. I did say that if either of them wanted to then we would support them 100%. 
A few weeks later on receiving the clinic summary in the post, I had to write back to her with inaccuracies, this was not the first time either. The Paediatrician said that she would write to her colleague the ME expert to see if there was anything she was missing for a sibling pair. She told me to give her some evidence so she could put some information together for Lewis’s DLA, so I copied the DLA from that I had filled in and passed it in the same week, as Hayley had an appointment at the hospital. We took her some flowers and a card (as she told us she was leaving for a new job at the end of April) to thank her for believing in us and for looking after our sons.

Arron and Lewis in light sensitivity glasses

Concerned about the unfair DLA rules for children with ME being classed as normal, even though they are quite ill, I made an appointment for Roger and I to see Oliver Colvile MP to discuss these issues. Roger and I saw my GP to ask for support as I had been going back and forth with writing to DLA from the previous year. It was all so much to deal with along with two sick boys and looking after my girls. My GP said that he would support but that he could not give me anything to help me being upset and that everything would work out. I never asked for anything for myself, I didn’t need it, just wanted people to help with support for boys. Lewis had to see an ATOS doctor at home, I had asked the paediatrician for advice to which she never gave me any.

Mrs Sally Hamilton who was Oliver Colvile’s MP Senior Caseworker, was fantastic as was he, she contacted me not long after we had been into see them both, she asked if she could do anything to help.  I told her that I had been trying to get hold of the Paediatrician as she had said she would help with the DLA report that was needed for Lewis so we would not have to go to Tribunal.  With my permission Mrs Hamilton tried to contact the paediatrician, but had the same problems as me for some reason, messages were left by myself and Mrs Hamilton, we were told that she was on emergency duty. When she did return the call the paediatrician told Mrs Hamilton, how we could go about putting in a complaint about her? Where did that come from, we did not want to put in a complaint, we got our MP involved to help with DLA.  I then received the report for Lewis from the Paediatrician so I could send to the DLA office. I took Lewis to see my GP at the end of January 2011 and a form was given to him to fill in for Lewis to help with DLA too. He had asked how Lewis was Lewis told him but had forgotten about pain he had in his shoulder, he said it was alright when it hadn’t been, I had to put some inflammatory gel on it, this was documented that I had suggested it too him.

On the 17 March 2011 I had a phone call from the Paediatrician, she had said to me that she had had a phone call from the boy’s and my GP, he was concerned that he could not help and wanted to know if anything could be done. She went on to say to me that she was thinking of what she could do and suggested that Lewis come into hospital for a few days so that she could do a Video EEG Telemetry on Lewis to investigate his sleep, specifically to see If his poor sleep was down to a sleep disorder or even possible seizures (he was waking up at night because he was in pain and was having really bad sweats this Lewis told her and me being his main carer) she said that seizures and sleep disorders could cause fatigue and that these tests could not be done at home. I was also asked If I had laid it on thick in Lewis’s DLA form, to which I replied no I haven’t and that you are told to put in the worse times which is what I did. She mentioned about physiotherapy but because Lewis was so ill when he did this before, naturally I was very concerned about this and told her so. I asked if Lewis could go in as a day case, to which she replied he could not and that it would be too tiring for him. I told her so would being in hospital, if day cases at least he could come home after.  
 Arron had not done physio up until now, he was referred and when I spoke to a physio she told me that there is very little they can do to help, if it did not help Lewis and exacerbated his ME it maybe the same for Arron. She would leave the option there if it was wanted.  The Paediatrician knew about this because I had told her.  The Paediatrician was very pushy with me and asked me what I was worried about, I felt pressured, I told her that I would need to speak to my husband and the boys she told me that I could stay with Lewis I mentioned about Arron coming in also to try to get them assessed together to which she agreed to, she also said that if we did not want to do now then her colleague who was taking over from her could arrange.  I spoke to the boys and they were really upset they did not want to stay in hospital but they would go as day cases.  I spoke to Roger about it, we felt we had no choice. So I phoned her back and told her that they were upset about it but okay, she said she would pencil them in from the 28 – 31 March 2011 and that I would be contacted beforehand so I knew what time to bring them in.  I also asked her what made her think that we were going to put in a complaint about her, she said it was what the MP senior caseworker Mrs Hamilton had insinuated that she was not doing enough to help, I told her this was not the case and that we did not want to put in a complaint about the Paediatrician and she replied to me well I didn’t think you would, she seems the type of person who will walk over and say whatever she wants to get her own way! This from a professional.  The boys became really upset about the prospect of having to stay in hospital. Roger would have had to take time off work so he could look after the girls. After much discussion we decided as a family that that the boys would be happier going in as day cases and open to some form of gentle physio. I emailed the Paediatrician informing her of our decision and the reasons why. We wanted the best for our sons and we wanted to work with the Paediatrician. I sent the email on 21st March. I left phone messages as I wanted to make sure that she had seen the email.  I had a phone call from her secretary telling me that she didn’t want me to worry and that she had my message, however the Paediatrician was on leave. I never did get a response back until on the 30th March. I had a phone call from a sister on Woodcock ward asking where Lewis was. I told her that I had sent an email and had tried to contact her, but had heard nothing back from her. The sister said to leave it with her. I never heard anymore.  

I then had a letter from the Paediatrician dictated 29 March 2011 typed on 31st March responding to my email. We did not receive this until the weekend. In the letter she strongly suggests the way forward was to have Lewis in hospital and she would facilitate Arron also.  The Paediatrician said she would arrange a meeting so we could discuss face to face with her the pain nurse and a physiotherapist. On going to a GP appointment with both boys, he asked them if they wanted to go into hospital as had been suggested, they both said no they didn’t want to. He told me that he had received a phone call from the Paediatrician, I said oh she said that you phoned her, he then said that she wants to make sure that she isn’t missing anything, and that it is unheard of to have had ME for 3 years and not to have made some recovery. Of course this is not true. People can have ME for years, the evidence is out there.  So the seed of doubt was planted.
Unbeknown to us the Paediatrician had written to Social Services in the February 2011, with concerns that there were possible fabricated or induced illness and that she wanted the girls to be assessed too, due to the fact that Hayley had selective mutism. 
And that started the ball rolling.  

Their first Strategy meeting was held on 7th March. I had the phone call from the Paediatrician 10 days later with the suggestion of the boys going into hospital. Their second Strategy meeting was held 6 weeks later after all services had done their chronologies of our family. On Friday the 6th May we received a letter from Social Care to say that they had been contacted by the Paediatrician to see if there was some help that they could offer from a Holistic approach.  

M. How did you feel about the Social Services being contacted?
I was so frightened. I contacted the Tymes Trust, which is the longest established UK service for children and young people with ME and their families. I was given some advice personally from Jane Colby, Executive Director, and she got all the professional referral team to speak to me. I was informed that they had many families contact them for the same reason, because they had children with ME and were threatened by Social Services. 

Lewis

When the two social workers came it was so frightening. We had done nothing wrong and were just the parents of two very sick boys. The conversation opened about a concern raised about whether the boys had had ME and had recovered and we were just keeping them ill, or that they still had ME but that they were not being pushed or encouraged enough. I said am I being accused of MSBP here and asked if it was a Section 47 Child Protection or a Section 17, to which I was told it was an initial assessment. I asked if it could turn into a Section 47 and I was told it possibly could but not to worry about it.  

The social workers were doing their job and were mindful of us; they were were kind and tried to alleviate our fears, but how could I not to worry about it when I had just been accused of having MSBP? 

The meeting went on and Roger and I told them we wanted to work with the Paediatrician, but it seemed to be her way or no way. I gave them a copy of the email that was sent to the Paediatrician about the boys being admitted to hospital as day patients. They had not seen this or been aware that I had made an alternative suggestion. Before they left they spoke with the boys alone. 
Such a traumatic experience for all of us. You try so hard to give your kids as decent a life as possible and to care for and protect them, and now our precious kids were all scared they were going to be taken into care. (This could have happened.) Lewis and Arron said it was their fault for being ill. How sad was that?

We'd had no idea we were under investigation. All the schools knew. They had all been talking badly about me because of the issues we had had over our daughter. Two boys with severe ME and a daughter with Selective Mustism - how could that be? And now the powers that be were wondering what kind of Mother was I? A loving and caring one, that's what! 

My happy, vibrant, children before ME invaded their lives...

M. At this stage you must have been wondering who you could trust?
I went with my mum to see my GP to ask for his support and to discuss our concerns. I told him that we were not refusing the boys going into hospital we just wanted them to go in as day cases. He said he could not go up against the Paediatrician and told me that it would go down the child protection route then. I was really upset. 
After the first meeting with Social workers they asked if they could come back for a Core Assessment to which we agreed. Then, a couple of weeks late when  a social worker came back to see us we asked if she wanted to see the boys, but she said no, they are fine leave them where they are. Then to our relief she said there was nothing to worry about, that they have found research that states differently to what they were told there and was no Child Protection whatsoever. I told them it was all because the Paediatrician had left out important information when she had initially contacted them, leaving Social Services no choice but to investigate us. How could she be so cruel and how could the schools follow like sheep? 
We had our Oliver Colvile MP and his Senior Caseworker involved with helping us with this.  Mrs Hamilton came to the first new Paediatrician meeting with us and supported us, she was just wonderful, and without her support I don’t know what we would have done without her. A senior caseworker for Oliver Colvile MP to be proud of, he has also been wonderful in supporting our family.  The boys were both re diagnosed with ME and then we were signed off from Social Services. The day after seeing the new Paediatrician I contacted my GP as I was told that I could get hold of a copy of the letter that the old paediatrician had written to the new one.  I went to pick it up, I was in such a state after I had read it, Roger had to come home from work.  When Chloe came home from school I tried to hide how upset I was I had to run upstairs to be sick. I shut the door and then the door opens and my little Chloe comes in and rubs my back. Brings tears to my eyes remembering she was coming up to 10 years old then. My health was affected greatly by all the emotional stress this caused, I had to go to the doctors as I was getting out of breath, with squeezing sensations to the side of my face, I had on seeing the doctor high blood pressure on the on the second visit, this had come down. The reason I had this with the side of my face, the blood pressure and breathing was due to the stress caused by what the Paediatrician had put myself and my family through. This GP I saw who had always been very good with my children who was very good to me.  He is at the same Practice and we all see him now and not my old GP who is the Senior Partner there.

Too upsetting when I found out what he had written about me, how could we as a family see him knowing what he had said and thought about me/us. I understand he has to safeguard children, just wish that he could have spoken honestly to me about how he felt.


M. Did you take any action about being accused of fabricating your children's illness? 

Once we were cleared then the hurt and the anger came. A complaint was put in about the Paediatrician. She had told untruths, said I stopped the boys from having CBT and that I would not go along with the recommendations for ME, even though Lewis had done both GET graded exercise therapy that made him relapse. It was said that an appointment was made at the hospital for Lewis to the Psychology Service and that I took umbrage to going through our family history and would not take him. An untruth this was never arranged. I was supposed to have complained about a junior doctor, however, it was not a complaint, it was a civil letter to say that Lewis and I were disappointed not to have seen her in clinic, seeing how she knows Lewis. I got a reply back. So many untruths told and I have the paper work to back this up.

Both primary school and Secondary along with the hospital school and even my own GP thought I was guilty. They all tarred me for being what I thought was a good mum, the SENCO of the primary school had said that I had suggested that Chloe had ME, I never suggested it I said that when she gets poorly which she did a lot in 2010, we got scared about it. She also said that I had a fallout with the Ed Psychologist, however she didn’t say as to what had happened with our daughter. It was said by her that I refused a CAF meeting, I never refused a CAF meeting I always said that one was not necessary as we were coping, but if it was I would ask. It was also said that I was compliant whilst people agreed with me, well if it’s not in the interest of my child then why would any parent, it’s not about being compliant it was about getting the right support for our daughter that she was not getting. The secondary school, well, that was another one, I apparently took to  teacher training for my daughter’s teachers on her condition, Err no the Speech Therapist took the training not me. We worked together at the clinic on ideas however, I spoke at the end to say how Hayley's selective mutism affected her. I fell out with the parent support adviser, so it states, however I didn’t, she was lovely, also said how Hayley was persistently absent from school, however, did not add that my daughter was out of school for medical reasons. There were other comments made that were out of context too.

The hospital school was also terrible when we were going through Child Protection investigation, they had always supported, with a fight the funding for home tutors and for Lewis to do his on-line school.  However, even when proved I had done nothing wrong, still we had to fight with the help of our Senior caseworker Mrs Hamilton and Oliver Colville MP to get the funding for Lewis again and then for Arron so he could start the same on-line school.  However, I was told that the hospital school wanted the boys to have a home tutor also, they were just about coping as it was that would have been too much for them and besides that we felt that this was just to keep an eye on us. Roger had told the other male deputy head about this (because I had been cleared), he was so rude with Roger he said that by him saying that it was an insult to his tutors, well what about the insults that were said about me? I contacted a local solicitor, who was brilliant throughout and she gave me advice and would have been there had we needed her. She also said that the reason they wanted someone in the home was for the reason of keeping an eye on us, and that legally we did not have to have them in our home, to which I told the new paediatrician and the hospital school. I also had to get educational legal advice from another firm of solicitors as the LEA were holding off and failing in their care of duty by not sorting out funding etc. All funding up until now has continued and I got the boys both Statemented so as to protect their education and funding for Nisai. Relationships with the school’s are better however, we still do not trust them.

My own GP said I was in danger of giving my boys a borderline personality disorder, and that I genuinely believed my sons had this condition. They did! I didn’t diagnose them. He said how I brought my mum with me to support my viewpoint, it wasn’t just mine. He said that he thinks I was well meaning and had the children’s interests at heart, however he also thought that I was unable to behave as a loving mother in any other way at the moment.  

My GP upset me the most. I still can’t believe what he said about me. He also said that the Paediatrician believes that it is rare to find a cluster of family members who have ME and Selective Mutisum. Do you see a pattern here?  

Since receiving the Strategy minutes I can see who said what. Roger and I had meetings with both schools and have written apologies and one school actually contextualised and put the things that were wrong right and sent a copy to the 
Head of Social Services. These meetings were also very upsetting and stressful for me but I am grateful for their apologies.

A couple of months after our ordeal, accompanied by our MP Senior Caseworker, we had meetings with the Head of Education and the Head of Social Services. We needed tell them how hurt and let down we felt by these services. 

Letters were sent on behalf of ourselves to Derriford Hospital about our complaint as questions were not being answered. Our complaint has been through an investigation with the Parliamentary and Health Services Ombudsman. I had a lovely advocate who gave my letters a final check before I sent them off. With the information I had been able to gather since obtaining my notes, she could not understand why my complaint had not been upheld. They all cover up when a doctor has done wrong, even when they are given the proof. Three years on and just as raw as the day it happened. I for one will never get over being accused of keeping my precious boys sick. My family and I do not trust professionals now, how can we after what we have been through? 

Jane Colby, a former headteacher and Consultant for the education of children with ME and Executive Director of Tymes Trust says:

"There is no cure for ME (Myalgic Encephalomyelitis). In its absence, management regimes are prescribed, typically based on cognitive behavioural therapy (CBT) and graded exercise therapy (GET).

In the case of children this may involve the application of Child Protection powers to enforce treatment. NICE confirms that patients may withdraw from treatment without effects on future care, but parents who decline, or withdraw children from, management regimes, which may have worsened their illness, can find themselves facing investigation for child abuse or neglect, or have their child forcibly confined to a psychiatric unit.

Tymes Trust has advised 121 families facing suspicion/investigation. To date, none of these families has been found to be at fault. Subsuming ME under the heterogeneous term Chronic Fatigue Syndrome (CFS) has confounded research and treatment and led to disbelief over its severity and chronicity. As evidence points to persistent viral infection, recommendations have been made to separate ME from CFS. International consensus criteria for ME emphasise post-exertional deterioration as distinct from fatigue. If the child with ME deteriorates under management regimes, re-diagnosis with a psychiatric condition can mask treatment failure and lead to blame attaching to the parent. A more constructive redeployment of resources away from Child Protection investigations into appropriate practical support or these seriously unwell children, should be developed."

From the peer reviewed paper 'False Allegations of Child Abuse in Cases of Childhood Myalgic Encephalomeyelitis (ME) by Jane Colby
http://www.tymestrust.org/pdfs/falseallegations.pdf

M. You speak positively about the social workers and how they dealt with your family.

The head of Social Services supported us after we were cleared and for this we are truly grateful. We do not blame them at all. However we do blame the Paediatrician because she suggested I may be fabricating my children's illness. Don’t get me wrong, I agree with Child protection, but not the way it was used to abuse us as a family. Had she have worked with us this would not have happened. The schools also had a heavy hand in this and made me out to be someone I am not, just because I have always spoken up for my children. We all have the emotional scars from this.

I would like to say thank you to:

Jane Colby for her selfless help and support when she is also ill with ME and the lovely team at Tymes Trust for their invaluable support. We as a family felt so passionately that Jane should get the recognition that she so rightly deserves that I started the ball rolling for Jane to be nominated for the Pride Of Essex Award for helping not only my family but many many others.

 

Dr Nigel Speight who helped us tremendously. I put him in the Pride of Britain Awards and got other parents to vote for him. He is Our family 'Hero'.    

  http://www.meassociation.org.uk/2013/06/dr-nigel-speight-writes-new-review-of-the-history-of-mecfs-its-clinical-signs-and-controversies-june-2013/    

Dr Nigel Speight writes new review of the history of ME/CFS, its clinical features and controversies | 3 June 2013

Oliver Colvile MP and Mrs Sally Hamilton who we call our Guardian Angel and who went above and beyond the call of duty. 

My dear Mum and Dad and my sister who supported me through this horrific time. My mum for always being at the end of the phone at any time, for helping me with wording when I wrote letters, for being there to cry to and hug. I just love them all so much and can't thank them enough.

My beloved Roger who helped and supported, not only me but our beautiful family through such a traumatic time. It has made our family and our love stronger and I love Roger and all my precious children with my everything.

And last but not least to all my friends for the love and support you have given us over the years. 

 

So proud of my children today

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