Adrian Hartley, Expert by Experience, on why the CQC State of Care report is important to him

As a carer, for my son Dale who has complex needs and comes under the Learning Disabilities umbrella, the State of Health Care and Adult Social Care in England report that CQC produce annually has always been of interest.

Having cared for Dale at home with increasing support for 33 years, he moved into a shared supported living bungalow, with 24-hour support as we looked to the future, yet we still provide part of the care.

Reduced carer commitment gave me the time to become an Expert by Experience (ExE) as I felt I had the relevant experience and insight caring for my son and through my voluntary work. This year in that role I was delighted to have the opportunity to attend the public launch at the British Academy in Carlton House Terrace.

Having been an employer of care staff through direct payments, providing the support for my son Dale, I have always highly valued the skill and dedication of care staff. I knew the impact of losing a vital member of the team, the effort that is needed to train, re-establish those skills and gaining the experience to be able to provide the intensive care.

The report identified the mounting problems as a Perfect Storm, highlighting regional variation in the ability of services to recruit and retain staff, which echoes Skills for Care’s annual report on the state of the workforce. That identified care staff turnover rate increasing for the sixth year running, resulting in 122,000 vacancies at any time within adult social care, with lack of training and qualifications and zero-hours contracts among factors driving workers to leave.

It was very good that this was picked-up through the inspections of mental health and learning disability services with too many staff lacking the skills, training, experience or clinical support to care for patients with complex needs. People’s situation seriously worsened through delays, both through difficulties in trying to get and by not always experiencing good care and support.

People with severe and complex problems should expect to receive specialist care from staff with highly specialised skills, in a setting that is fully tailored to their needs. CQC quite rightly need to push for a better system of care where people are at risk of, being hospitalised, segregated and placed in overly restrictive environments, by increasingly using special measures and independent mental health hospitals that are rated as inadequate.

Another issue that hit home with me was struggling to access care when people encountered a crisis in their lives, because local services are not effective in avoiding hospital stays.

Earlier this year Dale became unwell with the symptoms of an infection and staff contacted the GP practice, the GP would not visit but arranged a telephone conversation and asked for a sample to be taken to the practice. Getting much worse the next day without treatment, 111 was called and a doctor promised within the hour, when they did not arrive an ambulance was sent.

The crew took one look and diagnosed Sepsis, blue lighting him to hospital, at this point much higher doses of antibiotics where required but fortunately he recovered after two difficult weeks. Community services are greatly stretched, but prevention is clearly better than cure.

The care staff from the provider and parents maintained the 24 hour care while in the general hospital, because his complex needs prevent him from looking after himself. People need to know Dale to tune into his communication and understand his body language, to be able to support him properly, making him extremely vulnerable.

He was brought back to a small local hospital for the majority of time to recover, on a dementia ward, making the 24-hour care we provided essential.

As a carer representative on the County Learning Disabilities Mortality Review (LeDeR) Steering Group, I was able to use the experience adding to End of Life discussions, to point out how quickly people, who should be enjoying the peak of what life has to offer, can be equally affected.

Carers are always concerned that recent financial pressures have forced local councils to raise eligibility standards to reduce costs, not only removing people from access to support but also from being monitored adding to the uncertainty of planning services, inevitably leading to demands on other services such as hospitals and A&E.

There are a lot of knock-on effects and extra pressures when people cannot easily access the care they need in the community especially those who are less able to speak up for themselves.

Clearly some places have better care than others, and access to dental services was brought up during the discussions. Specialist dental services are needed for patients unable to visit general dentist practice due to their special needs, learning disabilities or Autism, as the only way they can manage treatment is under anaesthetic in a hospital setting.

In one of our local regions the special dentist retired two years ago and representatives of the local Learning Disability and Autism Partnership board have been meeting with NHS England’s commissions ever since in an attempt to re-establish the service back to a normal level. This has had an enormous impact on waiting times in the region, often at a time when the vulnerable person is in increasing pain, which is not something the general public would accept.

The report and the meeting looked to the future and possible ways of improving support, suggesting the need for more urgent focus on delivering care in innovative and collaborative ways, change the way services work together so that the right services are being commissioned to deliver what people need in their local area.

The Department of Health and Social Care is running a national adult social care recruitment campaign, ‘When you care, every day makes a difference,’ to encourage more people to work in adult social care. Providers and other care organisations are adopting new approaches to tackling workforce issues, with a particular focus on retaining staff.

The new Prime Minister’s first speech promised additional financial support that is so essential, yet we all anxiously await the Green Paper that will turn this into a reality.

It was very good to hear from Dr Sarah Wollaston MP Chair of the Health Select Committee in the House of Commons who attended the Launch along with other politicians, who thanked CQC for the report as part of the discussions.

The Expert by Experience (ExE) role has given me many opportunities to spend time and meet some fascinating characters and help me put what they have to say into the inspection reports that get written.

They are the reason we all do the jobs we love - attending the CQC report launch allowed me an insight into the current issues the services face and the chance to get together with many dedicated people who strive for a better future for those supported by Health and Social Care.