June 2019 - Carolyn Papakyriakou, Outgoing Carer Representative of RCPsych in Scotland

In this, my first blog, I stray from familiar formats of reports, presentations, meetings, seminars and conference feed-backs, to write a little about me – (i) as a Carer of a loved one with serious mental health illness and (ii) my time as a Carer Representative in its many different guises.

I hope that as a volunteer within the Third Sector from 2014 to date, this blog may be thought-provoking, as will my account as a Carer Representative on the Executive Committee (and later Devolved Council) of the RCPsych in Scotland from 2015 to May 2019 and as a Carer Representative on the Carer’s Forum and Committee Member at the RCPsych (London) from 2017 to 2019...

In 2011, my life, priorities and purpose completely changed, when one of my children returned home from a successful post-graduate career in London, very unwell. He was eventually diagnosed with a severe form of O.C.D and additionally, some years later, as Bi-polar. Up until that moment in 2011, since his graduation, I had only (unsurprisingly) been in his company on high days and holidays, so I had been unable to observe his deteriorating health, until he collapsed in the grip of mental illness.

Not only was this devastating and life-changing for my loved one, it had a huge impact on me also. Up until then I lived comfortably on my own, managing with ease a challenging full-time professional job that I prized. Trying, overnight to become a full-time Carer of an illness I knew nothing about (neither cause nor effect), with no help or guidance whatsoever, heralded a difficult and unmanageable time for us both. Looking after my loved one 24/7, working full time (I was the financial support) and simultaneously having no-one to turn to (or talk to) for any kind of understanding, support or advice, cruelly punished us both. Despite very delayed and infrequent home-visiting professionals (e.g. CPNs), no Carer help, or advice was offered to me, neither was I privy to any medical intervention or knowledge about his illness or about any medication he may / or may not be taking.  Within two years of isolated full-time Caring and full time working I became unwell and was signed off work for several months.

During this period of enforced leave and slowly regaining my health, I found, quite by chance, a Carer Adviser, then working from the Stafford Centre in Edinburgh.   This meeting changed my life and talking to her helped me to understand and focus on a way forward – not just for me, but also for my loved one and for my other family members - who had distanced themselves from our changed family circumstances.

I recovered sufficiently (after a three-month absence) to have a phased return to work, however I quickly assessed that the situation there (contributing to my medically diagnosed burn-out), remained the same and I retired six months later.

During this period, having also sourced some mental health information (via the Stafford Centre) and attending some meetings and an Edinburgh based focus group - I was invited to apply and join the Third Sector in 2014 - firstly as a Member, then Vice Chair of the Management Committee of Edinburgh Carer Council (ECC), then as a Director on the Board of Support In Mind Scotland (SIMs) where I am currently a Vice Chair and Chair of their Public Affairs Committee.  As a Carer, my negative experience and the inadequate medical care of my son, motivated me to try to help other Carers (and their loved ones) via Third Sector organisations.

In supporting the Third Sector and RCPsych, I did not restrict my commitment to only monthly or quarterly meetings.  I attended many events on a wide variety of mental health issues (independently or as a representative).  For example – at the Scottish Parliament and at various venues in Edinburgh, the Lothians and London.  I have also regularly written many investigative reports about the effects that serious mental health issues have on both Carers and their loved ones (we come as a package). 

I have attended events i.e. –

• With MSP Jamie Hepburn (then Minister of Sport and Health) and thereafter Mental Health Ministers – Maureen Watt and Claire Haughey;
• several events and presentations at the Scottish Parliament;
• with City of Edinburgh Councillors;
• Undergraduate Psychologists;
• A knowledge exchange with Visiting Swedish Mental Health Specialists;
• The Royal Edinburgh Hospital;
• And met with many of those with Lived Experience at formal and informal events (both Carers and Service Users). 

In 2015 I provided a critique to the NHS about their draft ‘The Matrix – A Guide to Delivering Evidence Based Psychological Therapies in Scotland’ that was acknowledged in the final draft.

I have seen first-hand since 2014, the escalating challenges facing Carers and their loved ones –

• Lack of funding in Scotland by Central and Local Government to the Third Sector (I know first-hand that this issue also affects the rest of the U.K
• Increased reliance on the Third Sector and Voluntary Groups, while these groups simultaneously juggle with the double whammy of reduced capital and human resources;
• Reduced professional support in the Community for those in serious need, be they Carers or Service Users;
• Lack of early intervention indeed lack of any intervention;
• Increased consultation waiting times in both Primary and Secondary Sectors with declining numbers of GPs and Psychiatrists available;
• Diminished / ‘unfit for the purpose’ G.P. consultation times (currently 10 minutes –though a 15 minute-slot has been proposed);
• Upsurge in Self-Medicating, use of Prescription Drugs and Legal / Illegal Highs;
• Lack of transparency from the ‘top down’ for all those directly involved with ‘Lived Experience’;
• Post-code inequalities and
• Lack of parity between mental and physical health etc.

In a happier vein, I consider that I have been very fortunate during my tenure as a Carer Representative on the Executive Committee of the RCPsych Scotland.  During this time, I have met a wonderful mix of professional people – headed by current Chair Dr Crichton and previously Dr Cook.

From my first attendance at the Executive Meeting in Queen Street, I have always been treated with huge respect and warmth – it felt like being a member of an all-inclusive and caring family.  I was made to feel (as a non-medical person), that what I had to say mattered and in a short time, I grew in confidence to believe this. Furthermore, my Reports were always welcomed and supported, and generous time was allowed for them to be addressed at the meetings. 

Over these past four years, I have been in the company of many inspirational people – including Consultant Psychiatrists, Professors; Research Fellows; Specialist Registrars, Visiting Specialists; Doctors, Doctor of Laws; Scottish Government Officers; - the list is endless.  I have listened to and chatted with most of these professionals and have learnt so much during my time at Queen Street and beyond.  I believe this has made me a more rounded Carer Representative, Board Director and Carer.   

I have some ‘stand-out’ memories representing the RCPsych Scotland during my tenure.  Here are just a few –

• My first visit to the Scottish Parliament at a Mental Health Summit in July 2015 where I was the only Carer representative out of 30 attendees;
• Attending the Scottish Mental Health Research Network Annual Scientific Meeting ‘Mental Health Research in the Digital Age’ in 2016;
• Attending the Scottish Public Services Ombudsman (the SPSO) and University of Edinburgh Global Health joint initiative ‘How Compassionate is our NHS’ in 2017;
• Feeding in to a Neuropsychiatry Project led by Dr Gareth Cuttle Project Manager (London) in 2017;
• The presentation I gave on my Carer journey to the RCPsych Recruitment and Networking Event in March 2019 at the Edinburgh Training and Conference Venue; and... 
• My presentation in 2017 to the Executive Committee outlining my research on the unfairness of the Personal Independent Payment (PIP) Claimant Interview and Assessment Process. Thereafter, following my PIP submission paper to the RCPsych (London), the Welsh division adopted this to include in a factsheet for possible distribution throughout the U.K.

My key hopes are –

(a) that the Mental Health Strategy 2017 / 2027 will drive transformative change - notwithstanding the complete omission of any commitment to adult Carers of those with Mental Health issues; and

(b) while I consider that Central and Local Government appear content to watch and wait as more and more people have to adopt an unsupported Carers role, that those who wield the power, will sit up and take comprehensive action to prevent further suffering and mounting despair for those who have ‘Lived Experience’.

Please remember that Carers and their Loved ones – We are a Package

In 2017, Professor John Gillies (Co-Director University Edinburgh Compassion Initiative) stated ‘Compassion is more than an emotion, it is felt and is an enacted desire to alleviate suffering’

I consider that all the members of the RCPsych Scotland I have met since 2015 and the young doctors I met recently who are considering a career in psychiatry, have this quality in bucketloads.  I have observed on-going dedication, professionalism and fairness and I feel very privileged and enriched to have met you all.

Thank you and au revoir.