Bringing the human perspective of caring into the mix

Blog by Karen Persaud, Member of the lived experience working group (LEWG)

I joined the MH PRU in 2018 as a result of a desire to help improve, help provide the evidence and ultimately, shape the future of mental health services.  I’d come from the perspective of being a carer and experiencing a great sense of bewilderment, isolation and anxiety throughout my journey.  I wanted to affect the experience of future carers. 

I had no training; this wasn’t a career choice, yet I was providing a front-line service in isolation and dealing with extremely challenging and complex situations without the support of a clinical team for the best part of the time. 

When I became a carer, I was faced a maze that I had to learn to navigate and throughout the maze I encountered non-responsive and outdated systems.  Why? Why? Why?... Why, in the 21st century did we still know so little?  With 1 in 4 people suffering with mental ill health why are the budgets so contrary?  Why can’t we provide the right therapy at the right time? Why are there so many young black males in mental health services?  If carers are providing a critical service, why aren’t they valued as such?

Facts and figures around caring:

  • 1 in 8 adults are carers1.3 million people provide over 50 hours of care per week
  • 5 million people in the UK are juggling caring responsibilities with work - that's 1 in 7 of the workforce
  • Significant demands of caring mean that 600 people give up work every day to provide care
  • Carer’s Allowance is the main carer's benefit and is £66.15 for a minimum of 35 hours, the lowest benefit of its kind.Carers save the economy £132 billion per year, an average of £19,336 per carer
  • 72% of carers responding to Carers UK's State of Caring 2018 Survey said they had suffered mental ill health as a result of caring
  • 61% said they had suffered physical ill health as a result of caring
  • 8 in 10 people caring for loved ones say they have felt lonely or socially isolated

Source: Carers UK

Many a time I called for help, outreach, but was told there was nothing that could be done, to wait until the situation became that of a danger to myself or others.  In other words, when it became physical or life threatening and then I would have to call the police.  How unhelpful was that?  I then also became the persecutor, pitted against my loved one.  It was a no-win situation and one that could have been avoided was there the right support in place.

Once the police are involved, we’re marching onto being sectioned and a loss of personalisation, familiarity and control for the patient.  As a carer your left with a sense of loss and impotence.  You’ve failed to protect your loved one. 

My dependent was in a revolving door in and out of PICUs, a “place of safety”.  That term made me wince!  The PICUs I experienced were cold places where people with a varied range of crisis diagnosis were held under one roof, with little personal space, TVs in cages, no therapeutic activity and a sparse outdoor space with no thought given to sensory planting, just patchy grass.  My dependent pleaded with me to discharge them telling me stories of attacks, urinating in corridors, seclusion, being restrained and medication forcibly administered and staff bullying.  So, you question what you’ve done.

As carers we rely on the services and staff to be what we need them to be, to be there when we need them and we want to be able to trust that staff have the right values and compassion and that’s why there doing the job. 

I was scared and emotionally scarred suffering with anxiety and depression.  I couldn’t think or sleep constantly worrying about the worst possible outcomes when my loved one was detained.  Both myself and my dependent needed the services, but could we rely on them?  Where was the healing aspect? why did I feel that I was an intrusion when visiting? Where was the support for the carer during this period of detainment? 

I was perplexed, sometimes angry but mostly sad.  I knew that the system had to change, and a responsive service was what was needed.  The system as it was only seemed to exacerbate the trauma many of the patients and carers were experiencing.  The system wasn’t able to respond to the human side but instead took away all control.  It seemed like it was from another time and not responding to the needs of people – just diagnosis.  Why don’t patients set the ward round agenda when they have capacity? Why do we force treatments that don’t work?  Why do we still not understand why some medications work? Why don’t we effectively collate and share good practice? 

In a time where budgets are getting ever tighter, we need to stop wasting money on preventable admissions and ensure there’s more accountability.  Humanity is everyone’s right and people suffering with poor mental health don’t always get this because the system doesn’t seem to recognise individuals, it’s overwhelmed, and the workforce challenged. 

Mental health is still stigmatised, and people almost blamed for their illness.  In some communities people are expected to pull themselves together and “sort it out”.  This doesn’t happen in the physical health arena, there’s much more empathy.  The disparity between mental and physical health needs to end. 

I’ve acted as an advocate for my dependent when they needed support or were in crisis for over 10 years’, so I understand what's missing from the treatments on offer.  When the opportunity to get involved and help shape future provision came about, I jumped at the chance.  The work of the MHPRU would play an intrinsic role in providing the evidence needed to help shape the future of mental health services.  I was really pleased to have been accepted to join the Lived Experience Working Group and that the MHPRU have recognised the value of having service users and carers involved and committed to this.  Working together only serves to enhance and improve the quality of the research. 

I must admit I was spluttering when faced with my first piece of work.  I was nervous and unsure of what was expected of me.  After all, I’m not a mental health academic.  However, I don’t baulk at challenge and the support and guidance I received from Vicky, LEWG members and the PRU team was fantastic!

Papers are now being published and I’m chuffed!  These are the foundations needed for change.

 I want to use my experiences to help and support others so that’s why I’m here.  I’m looking forward to getting involved in more work and especially qualitative interviews when possible.  People are more comfortable opening up to and trusting someone with lived experience and this extends to having access to culturally representative support.   What I can bring to the table is a unique insight into the needs of carers as well patients and the Black perspective.

I remember, during the early stages that I didn’t feel comfortable asking questions.  I didn’t know the questions to ask.  I felt that some of the questions might appear silly.  That’s not the case anymore because I have a better understanding and hope.


Despair paralyses, hope energises – a lovely quote I took from an old calendar