Please don’t burst this bubble – an exploration of the positive unintended consequences of COVID-19

Featured article - 25 June 2020
By Edel Harris, CEO of Mencap

COVID-19 has introduced us all to a new wave of vocabulary: Shielding, social distancing, furlough, and my favourite – the ‘bubble’.

Recently, in England, a person living in a single household or a single parent was given the option of forming a ‘bubble’ with another household. This simple instruction allowed additional support for parenting and in many cases combated the awful loneliness many people have endured during lockdown.

Choosing who to include in your bubble will take some consideration – you are prioritising another person or household over another, you are deciding to spend potentially intense time together and you will need to make things work.

• Easy read: Mencap's COVID-19 resources
• SCIE: COVID-19 advice for social care
• Other opinion articles in this series

So, as we get to grips with who we might want in our personal, social bubble, I’ve been thinking about some professional bubbles that we have seen forming over the last weeks and months.

Bubble one: Local authorities and social care providers

The pressure on local authorities and social care providers to support some of society’s most vulnerable people through a period of heightened emotion and squeezed resource has, at times been overwhelming.

A relationship that was routinely described in contractual terms; often centred around a transaction involving ‘hours of care’ and a series of contract compliance mechanisms, has shifted to a relationship based on trust. We have often questioned whether a transactional arrangement suits the complex business of providing care and support and whether it is ever a sensible measure of the quality of support that people are receiving and more importantly whether it is a useful measure of positive impact on a person’s life.

The pandemic has forced commissioners to put their trust in social care providers. They acknowledge that we are professionals who should be trusted to respond in a safe way, always putting the health and wellbeing of those we support and those we employ at the top of our list.

As we grappled to respond to the first stage of the pandemic there was a general acknowledgement that with many day services ceasing and changes to the daily routines of many of the people we support, there would be a requirement for flexibility in service provision, especially with so many of the workforce shielding or self-isolating in those early days.

There was an understanding that care providers would introduce adequate infection control processes and follow the guidance coming out daily from government. And with the stepping back of CQC inspection visits, care providers were trusted to stay on top of their safeguarding and quality assurance policies despite the turmoil.

Driven by need rather than design, the relationship has started to shift.

The majority of Mencap’s commissioning authorities have provided funding to allow for the anomalies of under and/or over delivery of ‘hours of care’. There is an understanding that care and support will be provided when it is needed and in a way that meets the needs of every individual person. The outcomes for the people being supported became far more important than the budgets and the contracts. After many years of calling for outcome-based commissioning we have naturally seen this occurring.

We need to build on this and move away from ‘delivering a service’ that is sold to the lowest bidder and one where annual negotiation for uplifts in funding can become frustrating and often unsatisfactory.

It is only by ending that transactional way of working that we can really put individuals in charge of determining their own care and support needs.

Let’s not lose the emphasis on collaboration - local authorities, social care providers and individuals working in partnership, respecting each other’s role and trusting each other’s expertise.

Bubble two: The social care workforce and society

COVID-19 has not been the leveler we first thought, not just in terms of its severity, but also in its wider impact. We have all responded to lockdown in different ways and have found different aspects of the situation particularly challenging. This is no different for people with a learning disability.

Mencap’s team of support workers always work in a person-centred way, responding to the individual needs and wants of the people with a learning disability whom they support. With stretched resources, limited external social options and sometimes increasing tension and discomfort within a supported living setting, our staff have had to carefully understand and balance people’s priorities.

With prescribed activities no longer available, our teams have become so much more creative. If Julia misses her regular pint of shandy at the pub, a garden shed gets turned into a bar; if James is struggling to understand why he can’t see the face of his support worker through PPE, it has been explained to him by dressing his teddy bear with a facemask.

The long-established formula of ‘someone’s immediate needs’ minus the ‘number of social care hours allotted to them’, leaving a set amount of time for ‘additional wants or desires crucial to their wellbeing’ has had to be scrapped. There has been no formula during lockdown but rather an agile, responsive, kind and human response to the needs of the people we support and their families.

Let’s celebrate the creativity and loyalty of the social care workforce and within a more relaxed regulatory framework let us show our trust in them and afford them greater freedom for problem-solving and creative thinking.

Let’s reward and respect them for the great work they do and no longer accept the narrative around ‘low skill’ and ‘minimum wage’.

Bubble three: The social care sector and the NHS

The health inequalities faced by people with a learning disability are well documented – they die on average 25 years before others in the general population and often suffer from poor care and delayed treatment. It is no surprise, then, that a health crisis on this scale will disproportionately affect them.

What was a surprise, however, was seeing some of these often-hidden inequalities being played out. For example, many people with a learning disability were issued with Do Not Attempt Resuscitation orders based simply on the fact that they had support needs. The original clinical guidance on COVID 19 wrongly conflated having support needs with frailty and caused alarm amongst people with a learning disability and their families.

From data released by CQC, NHSE and the learning disability mortality review we have seen over 130% increase in the number of recorded deaths of people with a learning disability when compared with the same (non COVID) period last year.

• 2 Jun / BBC: Pandemic sees spike in learning disabled deaths

At the same time, we have seen in some cases reduced levels of social care whether it be day service provision; respite or a reduction in the level of support.

In the middle of all this are people. People who, because of their learning disability, need help to live the life they choose. They are not concerned whether this is classed as healthcare or social care; they don’t mind whose budget the funding comes from as long as it is adequate to meet their needs.

We all know that the existing two systems don’t work seamlessly together, and when they are put under pressure, we see life-threatening decisions being made. But when the two systems do work well together the outcomes have been life-changing, if not life-saving.

For example, local authority and NHS staff have mobilised specialist learning disability teams to assist where coronavirus outbreaks have occurred and have provided the necessary reasonable adjustments within acute settings to ensure that people with a learning disability are understood and supported in their care.

Unfortunately, the lack of local communication systems and the absence of sharing data results in confusion, duplication and inefficiency and at a time of crisis all of these are amplified.

The costs of managing the pandemic and protecting disabled people will undoubtedly add significant pressure to local authority budgets which will impact on the funds available for independent social care providers. In the NHS, these costs will be born centrally but this is not the case for the 152 local authorities in England. The existing fragility of the current model must be addressed.

Social care providers are calling for more attention and better remuneration for the social care workforce. This will take an understanding of the demographic profile of the social care provider workforce, including age and ethnicity, to mitigate risks associated with COVID-19 in view of the evidence of higher mortality rates amongst this workforce. It will also take a serious commitment to make bold funding decisions – “whatever it takes.”

Social care has squeezed into the NHS bubble.

The clap for carers, the introduction of the well-intentioned care badge and a renewed media focus are all little steps in the right direction. But we haven’t seen any major national moves to bring the two sectors together in a meaningful way.

We recognise that we all work best where we plan and deliver together; a dialogue of equals.

As we come out of the coronavirus crisis let us make this the time to seriously consider an integrated health and social care system that is managed locally not centrally and one that places the person receiving care and support at the centre.

Let’s ensure the third sector is an equal partner in creating a single plan within a timeframe that allows the space for collective reflection, to agree a practical, deliverable framework to manage a post-COVID world.

Summary

So when this is all over, we want to pop those social bubbles and mingle freely once again with no one or two metre distancing rule in sight

However, we shouldn’t 'pop' but rather strengthen those professional bubbles that have naturally formed – ensuring people who rely on health and social care are in the collaborative bubble with key decision-makers and commissioners, and all those involved in supporting them.

• Edel tweets @Edelharris