It has been a couple of months since we updated but don’t worry, we haven’t stopped working! We have been coming down from a crazy rollercoaster ride.

Where are we now?

With the help of our very hard-working County Councillor Lorna Dupré we managed to get meetings with the CEO and Director of Social Care (SC) at Cambridgeshire County Council (CCC). We are sharing here our experiences at a systematic level: they both appeared very interested and asked questions; they committed to looking at the issues closer, and coming back to us with more questions to investigate matters further; and they committed to supporting resolution of our situation. Due to this positive engagement from the Director of SC and meetings with the care agency, Rohan’s package now appears to be safe at this agency with all his previous carers.

We were also invited to a meeting with the CEO and the Chief Nurse of the ICB (Integrated Care Board). This meeting was very positive and they have been very open in discussing our concerns, though there was resistance to believing the acts of their officers were deliberate – they appear to think these are ‘misunderstandings’.

What are we doing next?

We received more SARs from the Local Authority (LA) and have found patterns of behaviour in both the ICB and LA that are not supporting Rohan:

  1. Poor care planning – this is due to pre-decided agendas, and creates more work and conflict between the LA/ICB and families.
  2. Breaches of confidentiality and misrepresentation of how GDPR should apply, in order to intimidate/quieten parents.
  3. Poor communication between professionals, care providers and deputies/parents – this again creates conflict between these groups.
  4. Misuse of safeguarding (SG) – this is an abuse of power; and where the SG process is implemented it is done so in an ineffective way and so is a waste of time and money.
  5. Use of parent blame and demonisation of parents by authorities and care companies to achieve predefined agendas, and represent us as unstable and working against best interests of our children – another abuse of power, frequently used in the Court of Protection.

What do we want?

We have taken these issues and turned them into the positive outcomes that we want to see, which would support both us and other families as we look to work with the ICB going forward:

  1. Proactive care planning using a collaborative approach, including professional advice and parental contribution. This includes not just looking at basic health needs, but what this person needs to live a full and enriched life, requiring person-centred life planning and the ability to use the agreed budget in a flexible way.
  2. Respect for parents/deputies, endeavouring to have a positive relationship where our role in our children’s lives as their best experts is recognized and valued. This requires open and transparent communication with parents where the LA/ICB ask curious questions when things are not clear or there are real concerns, and do not simply accept the view of ‘professionals’ who don’t know our children without question.
  3. Where Safeguarding issues arise and require investigation, they should be treated equally whether they arise from parents or professionals. Investigations should be open and transparent and involve parents and deputies. Formal safeguarding investigations should only be used as a last resort, not as an operation tool. Outcomes must be shared with all parties.

We will continue to work with both the LA and ICB to achieve this and keep this page updated. We are soon going to meet the Principal Social Worker at the LA and have further meetings with the CEO and Chief Nurse at the ICB, so watch this space! We are committed to supporting our son and others in our area, we need to continue working together, so please don’t hesitate to share our message. Thank you for your on going love and support!

NB The picture above is Rohan and I sat on a cable car at Pleasurewood Hills, we had a great day.

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