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Which Regulators and Oversight Bodies Did I Approach ~ And Which Helped?

In my quest for justice and remedy, and after having exhausted the corrupt Sussex Partnership NHS Trust complaints process, I reached out to a host of regulatory and oversight bodies for help, in desperation. This alphabet soup of bodies, is a toxic recipe of negligence, ignorance and abdication of responsibility.

In a new article titled "Healthcare Needs an Ombudsman" (in other words, PHSO is ombudsman in name only) by Bruce Newsome, he says:

"Parliament’s Public Administration and Constitutional Affairs Committee (PACAC) counted more than 70 organisations involved in health complaints or investigations, of which “no single person or organisation is responsible and accountable for the quality of clinical investigations or for ensuring that lessons learned drive improvement in safety across the NHS.”

Here I will list which ones I approached, and what their response was and you will see that obtaining justice and remedy in the UK is deliberately denied, none of them are interested in resolving complaints. It's like a merry-go-round, where they deliberately send you elsewhere so you are going round in circles. Ever decreasing circles. And I want to ask, if organisations say they "don't investigate individual complaints" to fob people off, how will they know they are individual? They need to receive complaints to see whether there is a systemic issue! But also, when a complaint involves breaches of law as mine does, surely these oversight bodies are supposed to use their powers, because if a Trust is breaking those laws even in regard to one person, that's a wider issue. A Trust is also hardly likely to breach list of laws only in respect to one person, they will be doing it to others (and it's inevitable in the case of how they are behaving over autism, with SPFT). They can't pick and choose when they comply with the law.

It's bad enough for anyone to endure all this, but imagine if you are an autistic carer, with ADHD and health issues, who has two children with special needs and sigificant difficulties, who has been attacked and failed by the very professionals that are supposed to be there to support - and is then reaching out to all these bodies and getting turned away.

Care Quality Commission (CQC) an executive non-departmental public body of the Department of Health and Social Care."We monitor, inspect and regulate services to make sure they meet fundamental standards of quality and safety. We make sure services meet fundamental standards below which care must never fall. Where we find poor care, we will use our powers to take action." I am dealing with them to this day, I was given a reference number but they stopped responding. The advocate who submitted my PHSO complaint recommended PHSO report SPFT to the CQC but PHSO didn't even acknowledge this request, they ignored it! I contacted CQC direct first in April 2014. Their response was that they "cannot get involved in individual matters of complaint", but they assured me my feedback was valuable and would be "taken into account". I asked them if their inspections included the autism facilities and I found out their inspections involve observing and talking to people, but they don't inspect any records. I asked what they do about providers breaching NHS NICE Guidance and the Autism Act 2010. They just repeated that they don't investigate individual complaints and told me repeatedly to go to PHSO, who I told them I had already been to. The email correspondence went on (sporadically) over several months and in November 2015, I sent them the information from the FOIA which showed SPFTs Neurobehavioural Clinic's poor practice that breached NHS NICE, was affecting autistic people as a group, not one individual case. I also told them I had evidence of SPFT colluding with PHSO.

CQC told me on 1.12.15 "If CQC found evidence that an individual health care professional was providing unsafe care or treatment we would report that matter to the profession's professional regulator." To date they have not done that, nor even asked me for the names of the clinicians involved. CQC's own website states that "where we find poor care we ask providers to improve and can enforce this if necessary" Their website also says CQC are: "Always on the side of people who use services". All the following statements are also from their website: "Everybody has the right to receive safe, high-quality care. If we find that care has fallen short of this, we use our powers to take action against those responsible." and "Protect you from harm and make sure you receive care that meets the standards you have a right to expect." and "We listen to and act on experiences of care in our inspections and throughout our work. We monitor changes in quality by bringing together what people who use services are telling us, knowledge from our ins​pections and data from our partners." and "Monitor and Insight Gathering local intelligence to inform the ongoing regulation of all sectors with a particular focus around targeted groups such as seldom heard communities and people with protected characteristics" (that applies to the autistic community). All they did whenever I replied to them, was keep repeating like a parrot that they don't investigate individual complaints, I kept telling them it wasn't an individual complaint and offered the evidence, which they eventually asked for only when I pointed out they hadn't, in March 2019. Instead of taking action on this evidence, they just said they would use it "to inform our ongoing monitoring, inspection and review of the service." They said it went back ten years, but I pointed out to them that whilst it started that long ago,, it continues on until the current day and in fact the current CEO (who I personally met with in April 2019) was condoning and allowing unlawful practice.

I told CQC:

"Therefore to summarise, I am formally asking CQC to use your stated powers and remit to take the following actions:

  1. investigate procedures and clinical standards of ASD assessments from 2007 to date, at the Trust's Neurobehavioural Clinic, at the very least for those people who were not diagnosed;

  2. investigate failures in the complaints process at SPFT as per the cover-up culture;

  3. rectify my situation as regards offering me an autism care pathway as they are legally required to do (Autism Act 2009, Autism Strategy 2010 and statutory guidance)."

CQC then decided to tell me, that they have "limited powers" which are "discretionary" and "restricted to complaints about care received whilst either a person is detained under the Mental Health Act, or on Community Treatment Order". Funny they hadn't mentioned this before. So I then had to quote their remit from their own website, which says it includes dental care, ambulances, primary medical services, care homes and hospitals and clinics - which aren't to do with in-patient care or detained people. Their statement completely breaches what they are required to do according to their statutory duties (see P7-8) but they still kept saying it was an individual complaint, when I had told them it was about all the assessments by the Neurobehavioural Clinic going back to 2007 and the people they didn't diagnose. They didn't reply when I emailed them back stating this. So I chased up four months later (I have a lot of other priorities hence chasing things like this up has to take a backseat at times), sending them links to my website evidence and reminding them they are signed up to "Ask, Listen, Do". I had a reply in September 2019 saying they would pass my email to the relevant person and I replied reminding them that CQC is obliged to use it's statutory powers and duties to issue a Section 29A against Sussex Partnership NHS Trust for their failings, as described here: It simply resulted in another regurgitation of their parroted phrase about individual cases. I had to reply yet again explaining why it wasn't an individual case and I then asked them to investigate the CEO of SPFT under a Fit and Proper Person Test. because as a result of a personal (witnessed and audio recorded) meeting with her, she had proven she was allowing her Trust to continue breaching the law and was lying. I received a reply saying my comments were "being considered". Between November 2019 and July 2020 I had no further reply. I appreciate we have had a lockdown and many people off work, but this is a process than can be instigated regardless. I was just told that Tracy Sefton at CQC has "received my comments". Ms Sefton has repeatedly failed to take action and in her last communication, she said she wouldn't be replying again. On 29.7.20 I therefore emailed CQCs CEO Ian Trenholm and I await his reply. Watch this space.

Department of Health (DoH) now called DoHSC "A ministerial department of Her Majesty's Government, responsible for government policy on health and adult social care, supported by 29 agencies and public bodies. Responsible for keeping people safe and healthy, supporting the transformation of NHS primary, community and mental health services, and local authority public health and adult social care, ensure accountability of the health and care system." These are included because PHSO labelled cases they had closed but which were still not resolved, as "historic". Rob ("I am the ombudsman!") Behrens, stated at the PACAC meeting...(THIS WILL BE UPDATED IN DUE COURSE)

General Medical Council (GMC) a public body that maintains the official register of medical practitioners within the United Kingdom. Its chief responsibility is to "protect, promote and maintain the health and safety of the public by controlling entry to the register, and suspending or removing members when necessary." This complaint was specifically about my previous GP, not anyone at SPFT, he was involved in communicating with SPFT, trying to get my ASD diagnosis undermined, telling various lies and committing appalling behaviour (as detailed here) and also heavily contributing to SPFT's failures towards one of my autistic children. Despite the fact that I could prove the GP had breached multiple GMC rules (which I quoted from their own website), they refused to do anything. I therefore know from my experience with GMC, that had I reported the SPFT psychiatrists for substandard assessments, they would have done nothing. If they don't do anything about a doctor that lies on record, causes detriment and harm to a vulnerable autistic child, discriminates against an autistic patient, behaves extremely unprofessionally intending to harm that patient and seriously breaches data protection law, then they won't about negligent and non-compliant assessments.

Information Commissioners Office (ICO) a non-departmental public body which reports directly to Parliament "the independent body set up to uphold information rights". (THIS WILL BE UPDATED IN DUE COURSE)

NHS England a quality regulator, the UKs largest quango, an executive non-departmental public body of the Department of Health and Social Care. "It oversees the budget, planning, delivery and day-to-day operation of the commissioning side of the NHS in England as set out in the Health and Social Care Act 2012)". I emailed them at in September 2019 and they never replied!

NHS Monitor (2004-2016) an executive non-departmental public body of the Department of Health described as Independent Regulator of NHS Foundation Trusts. (Now part of NHS Improvement whose remit is "NHS Improvement is responsible for overseeing foundation trusts and NHS trusts, as well as independent providers that provide NHS-funded care.We offer the support these providers need to give patients consistently safe, high quality, compassionate care within local health systems that are financially sustainable.By holding providers to account and, where necessary, intervening, we help the NHS to meet its short-term challenges and secure its future."). Despite that they told me by email in March 2013 that: "From 1 April 2013 our main duty will be to protect and promote the interests of patients" they also said "the duties we have been given by Parliament do not include resolving complaints about health care services and we are unable to deal with individual complaints about trusts". They did say "When we receive a complaint about either an NHS trust or a foundation trust we record the information provided in our database to ensure we have a record for the trust noting the issues raised. This information is used, along with any other information we receive or have sight of in our standard monitoring activities, to assess whether the foundation trust is breaching its terms of authorisation, and if so, to take further action if we feel it is required. Or if the NHS trust is yet to receive foundation trust status, the information is used as part of our assessment process." and they also said they could "forward your concerns to the CQC" but as the CQC doesn't do anything either, what's the point!

NHS NICE an executive non-departmental public body of the Department of Health in England, which publishes guidelines. Despite them publishing the guidelines and despite that it has been proven in court that NICE guidance must be adhered to, NICE told me in May 2013 that: "we do not have a role in monitoring the implementation of our guidance". Well that's alright then! (eye roll...)

Brighton & Hove Clinical Commissioning Group (CCG) commission most of the hospital and community NHS services in the local areas for which they are responsible. I was left in a ridiculous position, where my NHS GP had coded my ASD diagnosis onto my health records but SPFT had rejected it, and both of them are NHS services commissioned by the same CCG! I contacted them and they told me they would (THIS WILL BE UPDATED IN DUE COURSE)

And that doesn't include the various advocacy organisations I contacted along the way, such as:

Patients Association I don't even know if they logged the details of the NHS and PHSO failings I had suffered. They were very good at ignoring emails to their helpline. And I wasn't the only person they did this to, which I know because of a pressure group I was a member of, in which others experienced the same.

Healthwatch "the independent national champion for people who use health and social care services" Another body that just records the concerns but can't do anything about it. Although they were very nice and good at communication, Healthwatch told me they don't provide advocacy. Healthwatch said they can write to an NHS body to remind them of their duties, but of course Healthwatch have no powers. Local Healthwatch offices send feedback to Healthwatch England (HWE), who claim: "To act as the national champion for people who use services". Local Healthwatch told me they can escalate specific issues. They sent me a link to HWE's escalation policy in 2014, but it is a broken link now and I can't seem to find a specific policy document now. Escalation would be to CQC. WHo as you see above, do nothing. HWE say they are independent of CQC, but they are also a "statutory committee" of CQC - and the chief accounting officer for CQC is HWE's accounting officer. HWEs committee is also appointed by CQC. So do you see how there is no independence no matter what they say and if CQC refuse to do anything, how are HWE and even more so local Healthwatch going to. HWE says they are a consumer champion of health and social care users and will challenge and scrutinise the way health and social care take account of peoples' views. As you can see, it's all very vague and generic. Although local Healthwatch were very helpful, they reached a stage where they washed their hands of it and just said they would include the issues in their monitoring reports. I contacted them in November about the issues with my SPFT complaint and PHSO. They just said they could record the information, they did let me write an article for one of their magazines on people's rights with autism diagnosis. But mostly they signpost onwards and "monitor" reactively by patient feedback sent to them.

EASS October 2013 they had liaised with my local Healthwatch and via them, told me that they only liaise with individuals they do not advise organisations of their duties. (THIS WILL BE UPDATED IN DUE COURSE)



And not forgetting the National Autistic Society. I emailed their Lorna Wing Centre in March 2013 requesting advice and assistance from Dr Judith Gould, knowing she was experienced in females with ASD. My email was passed onto their helpline. They just signposted me with generic advice which didn't help my situation.Then in December 2014 I also emailed their legal team. They never replied. I chased up a whole year later and they still never replied. They couldn't even be bothered to say it wasn't their remit, or they couldn't help. I have also Tweeted them and never received a reply. They simply don't care. Having seen their accounts, they spend over 70% of their donations and funding on staff/admin, so that shows you how little is spent on autistic people.

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