The poor relation – an unpaid carer’s views on integration

• Written by: Lynn Williams — Unpaid Carer
• Published: 17th June 2018

Integration is here and working well some say, but in reality, social care is still underfunded, and essential services are being cut.

It’s just two years since health and social care partnerships formally came into being; in many ways, it seems like a lifetime.

Integration of health and care was and is an ambitious (and laudable) aim.  I remember listening to a previous health minister (now our First Minister) outlining the Scottish Government’s intentions at a conference over five years ago.  She talked about patients not having to tell their story again and again and of a hope that a more integrated health and care system would be responsive, flexible, and focussed on prevention.

That vision drove the third sector’s support for integration as the foundation legislation began its parliamentary journey. That support was dampened however, as the Bill focussed on processes and procedures.

Whilst local authorities and NHS boards would hold all the votes on Integrated Joint Boards (IJBs) in relation to their own services, it was deemed to be a “conflict of interest” for third sector bodies to have a vote.  More importantly, patients and carers had no vote and therefore no real say in the services, which deeply touched and connected with their day-to-day lives. That was a huge mistake.

And where are we now?  We have a whole new lexicon of public sector speak and another level of bureaucracy which has driven a bigger wedge between people and those who “run” their services.  The shape and approach of integration has created less transparency and accountability.  Long meetings with reams of papers are not conducive to good decision-making.  There is little focus on quality of life outcomes such as reducing isolation – the loss of Food Train in North Ayrshire is an example of this.

Whilst those in more strategic positions than I (after all, I’m just a carer) say that integration is working well, what I see and hear publicly is a focus on outputs and not outcomes.  The continued obsession with delayed discharge – whilst important – can drive the wrong behaviours.  There is little sense that we are moving towards a more seamless service.

In this context, the NHS gets all the political attention and investment.  That’s not necessarily a bad thing.  Our universal health care system is something we should be proud of.

However, this louder voice for health overwhelms the role of social and community care services, which retain their “poor relation” status in integrated authorities.

Social care is not valued.  The services which provide food, personal care and other vital supports are both life changing and life enhancing.  Yet they are procured cheaply, they are not funded properly and were the first to take a hit when the austerity agenda emerged.

They are still being cut, often without any real impact assessment or understanding of the fact that those who are expected to plug the gap are often women who give up their careers and financial security to provide increasing levels of unpaid care.

This poor relation is also in crisis.  A whole raft of research from charities like Leonard Cheshire, Carers Scotland and the ALLIANCE portray services, which are being decimated.

15-minute personal care visits are deliberately procured by a third of local authorities in Scotland.  Waiting lists for access to Self-directed Support (SDS) are not uncommon; families are not being given the choices envisaged by the SDS legislation; and direct payments can be insufficient to meet care or support needs.

As the Scottish Government turns its hand to developing a loneliness strategy, eight out of ten unpaid carers feel socially isolated.  Difficulties in accessing replacement care contribute to this, with carer health suffering as a result.  Lastly, care homes across Scotland continue to struggle financially – the poor quality of nutrition and the closure of care homes is the unhappy outcome.

There is, of course, the continued scandal of care charging.  A petition to consider the Care Tax has bounced around the Scottish Parliament and in the real world, I know families who can no longer afford to pay for care services and associated transport costs.

The care crisis is very real, and we haven’t really begun to consider how free personal care will be extended to adults under 65 (Frank’s Law).  The lived

experience of disabled people and their families demonstrate the human costs that arise from a political unwillingness to have, as Donald Macaskill says:

“…a grown up non-partisan political debate about what is the real and not the affordable cost of rights-based dignified social care, and not the system we have at the moment….”

Families break down; carers become ill and we lose valuable, preventative services, which often enhance the quality of people’s lives.  That carers are not really talking about the new Carers Act demonstrates the very real lack of hope or trust in public services or their political masters.  Social care is consistently underfunded; new legislation and small pots of money just create complexity and only partially plug the yawning finance gap.

Families I speak to in Renfrewshire and beyond talk constantly about battling for support; they despair when services provided in childhood just stop – with no justification – as their disabled children turn 18.  Our own, brief foray into the SDS world had us running into the hills to get away from a stifling bureaucracy which would have left me doing more rather than getting help with my caring role.

Social care is the Cinderella (in her rags) public service.  It cannot compete with the attention surrounding our NHS.  We cannot continue to build care and support services based on the lowest price possible.

That is the challenge for integration authorities as we move into year three.  How do we ensure that social care is treated with more love and compassion and that it is afforded the value it deserves?  How do we ensure it enjoys greater parity and a cross party debate about how to better fund it?

Tinkering at the edges of social care is no longer enough and integration authorities and Ministers need to look beyond political cycles and think big, alongside those of us who rely on both health and care services to live our lives.  Too many lives depend on this.  To keep our collective heads in the sand about this poor relation is to say that our families are not worth fighting for.

Lynn Williams can be found on Twitter at: @Carer49 (this link will take you away from our website).

Lynn’s Opinion is part of the ALLIANCE’s ‘We Need To Talk About Integration’ anthology which is available at the link below.

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