If you want to do us a kindness, find another way to plug the gaps. Vote for policies that prioritise the NHS and local government funding and challenge the austerity agenda.

Charlotte‘s #MadCovidDiaries 18.5.2020

Lockdown Mental Health Awareness Week

So Mental Health Awareness Week has rolled around again. I’m afraid I’m one of those jaded people with severe mental illness who feels that these days and weeks ring somewhat hollow, raising “awareness” without improving services or doing much to impact on the lives of people with entrenched conditions. They tend to operate at a very superficial “cup of tea and a chat” level that may benefit those with very minor symptoms, but have little to offer those diagnosed with long-term mental illness.

This year’s theme is “kindness”. There has been a lot about kindness in the media over the last six months; after the suicide of Caroline Flack all sorts of people added #BeKind to their Twitter profiles, despite their actual behaviour online. People are exhorted to show kindness and check in with their elderly neighbours during lockdown. Businesses are donating donuts to NHS staff. Doing good for others, we are told, can make us feel good and lift our mood.

Now what sort of a crotchety old biddy could have a problem with kindness, you might ask? What’s wrong with free donuts?

People with mental health problems live within a tangle of agencies that are supposed to provide help and support – primary care, community teams, hospital wards, crisis teams, drug and alcohol services, the Department for Work and Pensions, social services – all supposed to be there to help us live our best possible lives within our conditions. All too often, however, there is little or no kindness in service delivery. Yes, I have had some wonderful, empathic doctors and nurses involved in my care, but equally I have been on the receiving end of disinterest, callousness and gaslighting. The DWP reigns in terror over claimants who are afraid to open the brown envelopes that drop onto their doormats. Social services frequently fail to deliver on care plans/packages and personal budgets, so that even if staff are kind and empathic, the system feels uncaring.

Kindness, then, becomes something that people in adversity do for one another because the authorities will not step up and deliver. Although donuts and clapping for carers are lovely sentiments, there is a sizeable minority of healthcare workers on social media who are open about the fact that they would much rather that kindness was expressed by insisting employers improve pay and conditions and ensure health and safety in the workplace. The goodwill of locked down people towards key workers is laudable, but it is a gesture and nothing more when what is needed is systemic change so that the carers we clap for are treated decently by the systems they are embedded in.

Within the mad community we are often reliant on each other because we have fallen through the gaps in the official “support network”. If agencies do not provide full care, only two things can happen: the individual is abandoned, or a person outside of official channels steps up and plugs the gap out of kindness. Kindness is the finger in the hole that prevents the whole dam from coming down, and statutory agencies depend on it. The crisis team that expects housemates to keep an eye on severely unwell person. The social services department that relies on a neighbour to do the client’s shopping or a church member to drive them to their GP appointment. The person, themselves unwell, that orients the new patient to mental health ward because the staff have either little time or little inclination.

Here are some things I have done in the past five years because agencies didn’t:

  • Comforted psychotic ward patients
  • Given other service users information (not advice!) on classes and brands of drugs
  • Explained the differences between primary, secondary and tertiary care and between psychology and psychiatry to people new to the mental health system
  • Spent my own money on arts and crafts materials for the other patients on a psychiatric ward to enjoy
  • Been an escort for a lady with no friends or relatives in the UK so that she could have leave from the ward when staff were busy
  • Hung out knickers on the clothes line of a nonagenarian friend
  • Coaxed an older lady on the ward to eat
  • Helped people with their benefits claims and appeals
  • Assisted people in making complaints about care
  • Accompanied an elderly friend with severe breathing difficulties to outpatients appointments (and paying for the taxis)
  • Informing other service users of benefits advice services, local voluntary groups, mental health advocates
  • Donated to crowd funding for new wheelchairs, hospital ward OT supplies, furnishings for an empty supported housing flat and so on.

These are all things that I did quite naturally, but often other people refer to these actions as being “kind”. “Oh, it’s so kind of you to spend time with Mavis.” “You were really kind to share your PIP claim documents with me.” “It was so good of you to take Paula to outpatients.” “It was really nice of you to help that care leaver.”

In my view, every one of those actions on my part was a sign of services failing.  You might argue that they were my duty morally, spiritually or socially, but there are other people for whom they were literal duties for which they were receiving public funds. Some of the people I was “kind” to genuinely had no other source of support despite teams being funded to meet their needs. It is often commented by service users that the other patients were more therapeutic during their inpatient stays than the medical treatment they received. This expectation of kindness between vulnerable people is exploitative. We are our own benefits advisors, escorts, signposters, advocates, without remuneration other than others’ admiration of our “kindness” in a culture of NHS logo cupcakes and rainbow bunting.

If you want to do us a kindness, find another way to plug the gaps. Vote for policies that prioritise the NHS and local government funding and challenge the austerity agenda. Write to CEOs of health boards and mental health trusts, write to your MP, raise failings in services. Write publicity or news stories that are not about the violence mentally ill people might commit, do not feature the miraculous recoveries of people with single episode illness, and do not sensationalise suicide. Hold agencies and staff members to account. Make the world a place where we can have high expectations of the agencies paid to support us. Take some of the weight off our shoulders, because although kind, they are only so broad.

This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License. We ask that you seek our permission before you use any of our material – this includes researchers who want to harvest our data for analysis!

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