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."
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|
|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.
|Lewis, Arron, Hayley and Chloe|
Lewis Nathan Sleep was born on Sunday, September 15th 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 10th 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.
M. Was it difficult looking after a sick child and at the same time trying to meet his formal educational requirements?
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.
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.
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?
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?
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.
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.
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.
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.
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?
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 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.
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:
From the peer reviewed paper 'False Allegations of Child Abuse in Cases of Childhood Myalgic Encephalomeyelitis (ME) by Jane Colby"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."
M. You speak positively about the social workers and how they dealt with your family.
Dr Nigel Speight writes new review of the history of ME/CFS, its clinical features and controversies | 3 June 2013
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.
|So proud of my children today|