The Conference comprised of speakers including Chair: Beverley Hitchcock, Elly Chapple, Professor Andy Bilson, Professor Luke Clements.

“Trauma related practice: is a phrase increasingly used by public bodies to convey their awareness that many of those with whom they interact have experienced life changing traumas. As a rule, the traumas referred to are ‘other’ -in the sense that they are the result of adverse childhood experiences, domestic violence, mental health difficulties and so on. What is generally acknowledged is that many users of public services identify their most traumatising experiences as the way they were treated by the public bodies that they had approached for support.

Complex Systems Generated Trauma: what needs to be done: Chair: Dr Ana Laura Aiello; Mary Busk; Dr Peter Baker; Vivien Cooper OBE

Systems Generated Traumas of this kind are a daily experience for many people in contact with the social welfare system, including carers, disabled adults and disabled young people. There are a myriad of intersecting examples, but for the parents of disabled children these can include being prosecuted when their disabled child is ‘school refusing’, being refused support by children’s services when in desperate need, but then having their home inspected and their children interviewed for child protection purposes: being accused of fabricating or inducing their child’s o;;mess (FII) because they have asked for a second opinion from a health professional; being unable to access justice to gain redress for the damage done by behaviour of this kind – and so on.

About the speakers:

Ana Laura Aiello – post doctoral researcher on the Cerebra LEaP project (Leeds University) – (an innovative problem-solving project that helps families of children with brain conditions cope with the legal barriers they face. We listen to families and help them get knowledge they need to access health and social care/other support services and identify common legal preventative problems) Ana has studied law and human rights in Argentina, Spain and UK and worked for Amnesty International, Disability Rights International and CHANGE and at universities in Argentina, Spain and UK.

Beverley Hitchcock: Head of Research and Information – Cerebra

Derek Tilley: Senior Development Officer – Cerebra Legal Rights team.

Elly Chapple: Founder of #Flip The Narrative – TEDx Speaker

Luke Clements: Cerebra Professor of Law and Social Justice at the School of Law, University of Leeds

Mary Busk – worked for public/voluntary sectors and founder member of NNPCF currently working for NHS England LD and Autism Programme and spoke in a personal capacity as a family carer and mother of one disabled child.

Peter Baker – Senior Lecturer in intellectual disability at Tizard Centre, University of Kent. Has worked as a Consultant Clinical Psychologist for NHS in Sussex with leadership responsibilities for Learning Disability psychology services in E. Sussex/Brighton & Hove. He is widely published in the area of challenging behaviour and intellectual disability.

Vivien Cooper OBE – parent of young man with severe learning disabilities and Founder and CEO of Challenging Behaviour Foundation.

It was good to meet up with some of my social media contacts and see such a huge turnout of parents and carers from all over the country who have experienced the most terrible traumatic interactions with various public bodies particularly social services and an ever increasing group of us parents and carers remain in touch via discussion groups on social media to share ideas and individual negative experiences and we all agree something needs to be drastically done to change a system that is completely broken.

Our Negative Experiences:

This goes back to 2010 and even beyond this and I honestly think things have got worse. 2010 was when Elizabeth was placed in a local scheme. The placement started off well but went to pieces when a support worker left and others took over. Isolated in her individual flat where “noone knocked on her door” Elizabeth quickly declined. There was not the 24 hr support in place just members of staff who occupied one room at the top of the building and no observation through the night as to whom entered the building. I wont go into what happened but because of no security this put a vulnerable person at huge risk of abuse. That was the start of my main complaints and then you see the ugly side in terms of response. Blame was focussed on me as a parent that I visited too often however I worked full time and was on a police training course on Saturdays. CCTV cameras went missing along with all of Elizabeth’s possessions but the blame was then put on Elizabeth. She should never have been placed at this scheme and I was right to voice concerns but when you voice concerns this is when you come up against negative reactions. If they see a parent as a problem who has every justification to be concerned, quite often if a placement has not worked out then out of area solutions are funded. On huge dosage of drugs Elizabeth could not function. Health and safety/risks not followed up on and that should mean if a placement is not safe then something else needs to be provided but carers and parents are cut out.

Elizabeth has been placed in many out of area placements as far away as Wales where restrictions were in place for visitors. Following on from this private hospital was a care home where suddenly there was a poor signal and you could not get through on the phone.

Fast forward to today Elizabeth has suffered immense trauma and so have I as a parent watching her go downhill with one wrong placement after another and the guilt feeling that if we had never moved we would not be in this awful position today.

Safeguarding cutting out parents and carers is used to distance and isolate a vulnerable person. This is our current experience. It amounts to organisational abuse when someone sits writing notes constantly and you have 2-1 supervision like you are a criminal. This is going on right now and has been for the most part in the new area where we have moved.

What they do is take the phone away and basically virtually stop contact between you and the person you care for. Nothing is done correctly as far as safeguarding goes. Safeguarding should be done in an open transparent manner. If there are concerns they should include you in their meetings that go on behind your back. It is bullying to carry out safeguarding in this manner.

I have raised safeguarding myself. Elizabeth has been isolating in her room and missing meal times but then the response they give is “there is nothing we can do – she is an adult and it is up to her – we cannot force her to eat”. However bearing in mind capacity they say she has none this is surely negligence. It was not me who complained to the CQC and I think this was the reason they acted but then the same problem reoccurred.

At the moment I am totally alarmed that Elizabeth is being prescribed a combination of drugs against BNF by a locum doctor – This is the 11th one employed by an Agency. I have raised concerns and even given references to relevant research papers. Faulty prescribing can cause significant harm leading to death and injury yet many doctors just ignore this completely and carry on.

Elizabeth never had seizures before coming to this new area. The safeguarding is clearly there to protect themselves. The seizures are life threatening so it is not unreasonable that I as a mother, carer and Attorney should draw this to attention.

The treatment my daughter has had amounts to cruelty, abuse, bullying and some of the staff over the past three years have acted in a callous manner and against me Police have been used by staff calling them during my visit such as Xmas Day and then a ban lasting months and months on end by the Responsible Clinician.

All sorts of blame and accusations are thrown at you and where is this safeguarding going to end. They failed at taking away the POA but there is no means for Elizabeth ever to be discharged – a prisoner for life as they took away that under the displacement of NR and “unsuitability” claims whilst those involved in safeguarding never visited but when required had to do reports and those reports showed conditions to be squalid and negative. During this time patients had approached me in the grounds to voice their concerns and to tell me that THEY were doing the safeguarding.

Many of the parents attending this conference have had the most negative experience of social services and I was not alone. It was shocking to hear how many had experienced similarly traumatic interactions with those supposed to care. The only good experience I have ever had from social services was with my father’s social workers who instead of working against me worked together and I kept my father out of care for many years as a result.

Nothing such as the above has been my experience of social services under MH. I have never had a care act assessment done. Elizabeth has never had direct payments to enable her to have some support in the community. The reports they may are full of error and untruthfulness which has been our experience both previously and presently. There is nothing but a blame culture and in file records negative reporting against you to justify their aims.

A lot of public money could be saved not wasted if professionals worked together with families instead of against them. This worked effectively in the case of my father who had Alzheimers so I am not saying they are all bad but my experience has been the vast majority have gone out of their way to destroy family relations and cause more harm than good.

The last thing I will mention is because of my concerns I applied for police records. I know not everyone’s experience of police has been good but I actually trained with the Police and their course was excellent. I also trust the Police who have not responded in the callous way social workers have but their time has been wasted on several occasions. The police records outline the huge amount of calls Elizabeth made in desperation which is the real reason they took the phone away. Elizabeth was desperately trying to get help from the Police at a time she was according to other patients being abused by the vast majority of night staff. In certain records it stated that her calls related to her being starving hungry as because of over drugging and constant RT she isolated in her room for much of the time and the drugs were raised to double leaving her fit for nothing.

When you ask if safeguarding is in place due to excessive restrictions and raise safeguarding concerns yourself there is flat denial and refusal of a meeting that could be useful to dispel concerns (such meeting once took place behind my back ie s42 with everyone present) except the person they make out to be the perpetrator but luckily Elizabeth picked up the minutes and gave them to me. I feel like featuring them to show how vicious professionals can be behind your back.

Safeguarding should be open and transparent and not done in a biased secretive manner and because this is going on presently I am not allowed to see my daughter alone and have been deprived meaningful contact for so long I see this as extreme bullying – as one member of staff commented “it is evil to keep her from her mother on her Birthday”. It is constantly being mentioned this is being done to “keep her safe” however safe from what exactly as from her appearance Elizabeth is clearly going downhill, her face full of red marks and distressed about staff making notes during visits and most concerning is where are these notes leading and they are bound not to be pleasant. It is cruelty and abuse of power on the part of professionals to do this to a parent and carer knowing full well that this is also impacting greatly on the vulnerable patient who is clearly unhappy about all of this and then to rob her of her mental capacity in tests that were not done properly. I am talking here not just of social services but Health Boards too. It is done out of control to isolate and work towards severance of contact as I see it.

There is no greater punishment by professionals to stop a parent and carer from having contact or put enormous heavy restrictions in place and it is also detrimental to the vulnerable person to be isolated in this way. It is harmful that a team can stick together in such a way and there be no accountability. It is harmful that file notes are not accurate and contain untruthful comments. For parents and carers their lives are ruined and I would describe my life as barely worth living solely down to the way we have been treated like criminals and it is only ever one sided.