NHS Reset is an NHS Confederation campaign to help shape what the health and care system should look like in the aftermath of the pandemic.
In this blog, part of a series of comment pieces from NHS Confederation members and partners, Helen Hassell, mum to Karl, a 24 -year-old with complex physical and learning disability needs, draws on her experiences of her son's care to inform on transformation of our health and care services.
As I sit reflecting on the last three months, I have to admit to being physically and mentally exhausted. In the last few weeks, I have been diagnosed with a common form of skin cancer which should have been checked a year ago. Like so many carers, my own health needs get pushed back while waiting for ‘the right time’.
The pandemic has definitely had a disproportionate impact on children with special educational needs and/or disabilities (SEND) and their carers. The health inequalities already experienced by these families have worsened; the strain has increased. What has struck me about the response to COVID-19 is the ‘one size fits all’ approach, often failing these key groups of people. Meaningful co-production has been sparse and people’s voices lost in the ‘systems’, with the voices of children and young people championed by only a few.
I have taken on my son Karl’s care through this period, feeling it safer for the personal assistants (PAs) to limit their support to hands off ‘virtual’ contact until very recently. Being responsible for not just the huge physical tasks that need carrying out on a daily basis, but the incredible amount of mental and emotional support necessary, has taken its toll on me. Understandably, services have paused but the anxieties around when and how they will reset have been considerable for my son. ‘When will I be able to see my physio face to face? Why can’t I have my surgery any time soon?’
On the positive side, the digital leaps forward have empowered us to be more in control of our health needs and appointments, especially through the NHS app with the addition of Patient Knows Best currently being rolled out in Nottinghamshire. Whereas a hospital appointment would take at least half a day with significant anxiety and stress, they can now be done in the comfort of our own home by phone, resulting in a more effective appointment. The power has shifted, allowing more meaningful shared decision making. Long may this continue!
I look forward, with some trepidation, to needing to recruit a new PA, restart appointments and pick up some aspects of my old life. Like so many carers, I have felt incredibly isolated and really struggled with some family and friends who think that lockdown is over, allowing normal life to resume. I have no idea what ‘normal life’ is!
As a volunteer, I am privileged to support families in my community who have children with SEND. Having journeyed some of their roads myself, I am able to listen, laugh and cry with them. I truly feel that, together with unpaid carers, they have been forgotten in this crisis. Their rights have been stripped back and laws protecting their needs have been relaxed, with laws around education, health and care plans relaxed until end of July and do not resuscitates even in young people with learning disabilities.
Notts Parent Carer Forum created a ‘wordle’ from parents using words like ‘exhausted, frustrated, isolated and drained’. Parents reflected that they already faced an uphill battle to acquire and retain services to support them with their children, and COVID-19 obliterated any health and care support they had. These are families in crisis, with one parent stating she had begun to self-harm in this period. The Disabled Children’s Partnership survey, Left in Lockdown, makes for a stark read – families felt ‘locked out and abandoned’ by the government and society. Half of parents whose children had been receiving therapies or extra support before lockdown had seen it abruptly stopped.
Shielding children with complex needs has often meant taking them out of society – with a real feeling that they are out of sight, out of mind. What will a reset NHS look like for them? How do we give them equality in the health system? Some have benefited from digital innovation, but these children often need a very hands-on approach by skilled and highly trained professionals.
As a public and patient leader, I want to rise up and fly the flag for all people I represent. I need to re-double my efforts to ensure that the voices of children, young people and their families are heard above all the system-led shouting. But I want a health and care service that will do this too.
We have an incredible opportunity to reset to something new that focuses on the needs of the youngest in our society. I passionately believe that by providing a system that allows for true personalised care for our children, we will empower these young people as they move through their adult life. Disparities between provision of health and social care must be removed, so that all people access the care they need.
As we consider a reset NHS, my ask is that we give all people a seat at the table so that it is not purely system led, and all health organisations embrace the voices of SEND children and their families and unpaid carers.
Helen Hassell is a passionate advocate for personalised care and a member of My Life Choices and the NHS Assembly. Follow her on Twitter @HelenHassell2
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