Citizens Advice Powys - supporting mental health inpatients

Yasmin Bell is the Chief Officer at Citizens Advice Powys, the charity which “provides the advice people need for the problems they face and improves the policies and practices that affect people's lives.”

The charity recently launched a new pilot project to benefit the inpatients on the mental health Felindre Ward at Bronllys Hospital in South Powys. We spoke to Yasmin to find out more about this important work.

Tell us more about the project

Owen Griffkin, the Powys Patients’ Council facilitator, and the Occupational Therapy (OT) team on Felindre Ward, had been talking to us over the last year about setting up an inpatient advice service. We want to support patients with various issues which are acting as barriers for them wanting to return home and on their recovery process generally. We will continue supporting them once they are at home.

One of the OTs said that some patients, escorted to their homes on day release, had become more anxious upon arriving at a freezing cold home and finding a huge amount of mail / bills. It’s not a very welcoming scenario!

In the long term we would ideally provide support so that people don’t go on the ward in the first place.

How does the support work?

We did a similar project on Felindre Ward about 10 years ago and staff remembered how useful that was supporting people on their recovery journey. At that time a Citizens Advice advisor from Brecon went onto the ward to see people. With Covid we are using video appointments. The ward has iPads available and supports patients to access the platform and then we take it from there.

There’s quite a lot of work we do with the team before we meet the client – every individual can be different. Some people can be uncomfortable about speaking to someone about their issues. In that case the OT will work closely with us to find out what kind of help is available before going back to the person to give a flavour of the advice that could be provided. This usually results in the person then taking an appointment and with a better insight of what help can be provided.

Some of the original project outcomes included – less hospital staff time spent on advice issues, improved patient engagement with treatment, reduced barriers to patient discharge, clients feel more able to stay in their own home and in control of their lives, and improved mental health. The support enables independence, self-management and clients receiving all benefits they are entitled to.

Why was the work of Powys Patients’ Council invaluable in setting up this project?

Owen and the PPC volunteers had been speaking to people on the ward and through this helped identify the need for a direct advice service to support people.

We’ve had a lot of positive comments. One patient said: “I had an appointment with Citizens Advice today and they were excellent. They were able to help with my pet and some money issues.”

How is the project funded and for how long?

This pilot project is funded by a recent Powys Teaching Health Board Small Grants scheme. It lasts for 4 months so will end at the end of May. Through this pilot we will determine the level of demand and the feasibility of the service.

Tell us about some of the everyday issues facing people on the ward and how your service can help?

We identified that it was particularly important to help patients report their change of circumstances with regard to any benefits. Once discharged their benefits can be reinstated with our help. Citizens Advice Powys can also take responsibility for contacting any third parties and putting a hold on any action pending, for example, debt repayments, until that person is able to deal with them. It’s also important to inform the third party that Citizens Advice is helping the person.

We also make sure people are getting all the right benefits – we carry out an Income Maximisation Check – looking at the person’s whole situation. In many cases it can be quite complex – other benefits can be triggered or stopped. We act to make sure there is no detrimental impact on the person.

What is Attend Anywhere?

That is the video platform we use – it is used by the NHS across Wales for consultations with specialists. It’s similar to Zoom or Microsoft Teams but it’s almost like an office set up with a reception, and five interview rooms. It does mean people can have a family member or support person with them in the interview. Language interpreters, including British Sign Language interpreters, can also be included as part of the free service we provide.

Has Covid had an impact on people’s concerns / issues?

There has been a huge increase in people receiving Universal Credit which is a very complex benefit – so people do need support with this. Employment enquiries have also gone up. We are encountering people who have never had to claim benefits or ever had financial difficulties before – so people could become patients on a mental health ward because they’ve never had to deal with that level of poverty before.

Issues are much more complex than they were ten years ago. For example, with a debt client, the level might be the same but the client may owe debts to numerous different creditors where previously it would have been one or two. Then there is the added issue where creditors sell the debt on and on – and trying to unpick it all is a lot of work.

Covid has also added a level of frustration through not being able to get through to departments they need to speak to like the Department for Work & Pensions and energy providers. We can help speed up the process.

We also support people on three-way video or telephone calls with the Citizens Advice advisor doing all the necessary work whilst the client sits in the call. There is no cost to the person themselves for this support.

If people don’t receive the support they need, what could happen to them?

People who have been stressed previously can feel much more optimistic and calm about the situation. Long term if we receive continuation funding we would like to start looking at whether people go back into the hospital if they have received support. If issues have been going on too long it is harder to resolve them so we want to do more preventative work, help people understand what we do and just basically say – don’t be scared about getting in touch.

If we are supporting someone with a Personal Independence Payment (PIP) claim we have to talk about their physical and mental health. We also support people through tribunals and hearings. People open up and perhaps admit for the first time some of the issues facing them which can be very traumatic for them to accept.

What are Citizens Advice Powys’s main priorities outside Felindre Ward?

It’s about early intervention, about making sure our services are accessible and available to everybody in different ways and working out the different access options. We want to build a service where we don’t assume everyone wants face to face or telephone. So we offer video also, some web chat, and contact by email. We want to raise awareness and stop people getting to really complex situations – it’s about averting a crisis.

Which other Powys organisations do you work closely with to provide support to people?

This is happening more than ever before. We’re working with Accessibility Powys to facilitate appointments and advice sessions that are accessible to people with physical or sensory impairments – trying out different methods and equipment. There are a lot of people out there who, if not in receipt of this service, would not have had any advice. There are people who have been shielding and isolating who have not had any support for the past year or so.

In the last 3 months we have had a 20% increase in formal referrals (statutory and third sector agencies) and also seen a 50% increase from mental health teams. So we’ve done a lot of raising awareness sessions – every Wednesday we invite someone to come and talk to our team about the work they do which has been really beneficial – this means we can signpost to other services confidently too.

What are the main challenges of the project?

Client engagement is one of the biggest challenges generally if someone is struggling with their mental health. Sometimes people feel less anxious if they can turn their video off. So it can be small things that help. We try and think outside the box constantly to come up with a solution that works best for that person.

Some of the appointments can be lengthy so we split them into two sessions. If it’s a complicated PIP application you could spend up to 3 hours on that – so it’s managing the length of the appointment to suit the person.

Another challenge is ensuring we have all the right consent forms and paperwork completed. The OT team on the ward have been acting as our administrators in respect of these. It’s still a benefit to them though as they can then concentrate on the work they do best and leave the advice for us. It’s all about team work! So that’s a positive really!

Tell us about some of the most rewarding aspects of this project

The feedback from patients has been very rewarding: for example, one man said after receiving support he felt he was able to go home and contact the utility company and sort out the issue himself. (We would, of course, follow up afterwards to ensure it all worked out).

Knowing that people understand where they can seek help and are better able to manage.

One person was helped to reinstate a PIP claim and said of the advisor: “She was very kind, clear and helpful about my concerns. I found this extremely helpful over a subject I have been worrying about over the last years.”

When you are not working for Citizens Advice Powys how do you enjoy spending your time?

I do a lot of coastal path walking. My aim is to walk the whole coastal path of Wales. So far I’ve done a third of it.

I also volunteer as a Cadet Leader for Newtown Police Cadets and assist the cadets doing their Duke of Edinburgh Award. I recently completed my DoE expedition assessor qualification.

If you want to find out more about Powys Citizens Advice you can contact Yasmin by ringing 01686 617641 or email: manager@powyslca.org

Finally receiving treatment - a personal view

I was speaking to someone in Powys recently about their experience of "going outside of the NHS towards private talking therapy... a really positive step". A positive step seemed like a good subject for a blog post, and our guest author agreed. Read on....

As an individual I have been in contact with mainstream services for over nine years, both in Powys and in other areas of the UK. Over these years, a combination of GPs, psychiatrists and occasionally other staff such as Community Psychiatric Nurses and support staff from Community Mental Health Teams have made efforts to try and alleviate the severe difficulties that go along with a diagnosis of schizophrenia.

I have found that during times of crisis access to support has been available, given that it is asked for in the right way. The problem however, for me and many others, has been with the issue of getting back to being able to live and function on a daily basis and to a level where it would be possible to believe that the goal of full and complete recovery is not only a real thing but something worth pursuing.

Although there can never be a guarantee that severe distress, mental ill health or challenges to wellbeing won’t occur either in someone who has previously had first-hand experience of these things, or in someone who hasn’t, the journey I have been on leads me to believe in one or two controversial things.

Firstly, like many others, and as supported by a growing body of evidence, I have a problem with the medical model of mental ‘illness’. The medical model is not a simple view and advanced neuroscience is often used to highlight areas of the human brain which may sometimes work differently in those who are labelled as ‘schizophrenic’ (to use but one example).

That shouldn’t detain us here, for as well as the causes for this diagnosis being perhaps still largely unknown and certainly not agreed upon amongst medics, the issue of how best to treat the condition is a big problem.

In my experience the first and last option for many practicing psychiatrists has been to prescribe powerful anti-psychotic medication, which especially since the second generation of a-typical anti-psychotics have been used, can and do alleviate or suppress ‘symptoms’ (such as psychosis) and with less pronounced side effects than the original first generation medications.

After talking to a pleasant local GP about the possibility of finding other ways to treat my own condition than medication alone, we loosely agreed that some combination of medication and talking therapy would be a sensible plan. However, in Powys the availability of talking therapy through the NHS is highly limited and the waiting list spans several years. One person I met has waited for more than 6 years already.

There are organisations such as Mid Powys Mind in Llandrindod Wells who are able to offer a free counselling service and having tried a couple of months of weekly sessions with a volunteer counsellor I found that the ability to share problems confidentially and in a non-judgemental setting brought much relief. 

More recently though, the view that a deeper and longer level of talking therapy could bring improvements to the way a person feels and functions is something which I managed to pick up from sources such as this blog and which in turn led me to explore the availability of private psychotherapy in our area.

Despite living on benefits, with advice on Employment and Support Allowance (ESA) and Personal Independence Payment (PIP) from the Citizens Advice Bureau it has finally been possible to find just enough capital to arrange for regular sessions with a practicing psychotherapist. Partly this is enabled by my practitioner’s policy of subsidising out of work patients with a slightly lower rate to those who are in work.

When making the long decision to proceed, the view of my psychiatrist was that for certain conditions which they believe to be entirely inherent or set in stone within a person’s biological constitution, there would be a risk associated with stirring up long lost memories or otherwise suppressed thoughts and feelings. I was glad of the discussion we had but, in the nicest possible way, could not disagree more strongly with any view which maintains it is not worth pursuing.

After the first couple of months of psychotherapy the tangible areas that many doctors ask about such as mood, sleep and appetite showed marked improvement and once more it seemed that the future could hold prospect and possibility rather than simply being a drab and bleak inevitability, where, to put it frankly, death would have been a welcome event.

I can’t speak highly enough of the time and space that I am lucky enough to have found within which help is given by another mind to sort through the problems and issues which we otherwise face on our own. This would include issues that an individual is aware of and also issues which it is almost impossible to be aware of by yourself.

As for ‘symptoms’, although my therapist is mindful of these and very respectful of the view of GP and psychiatrist, the outlet for me to unburden and unpack life’s major and minor worries means that as long as any possible reduction in medication is done gradually and carefully there is someone else to help keep a watch should difficulties arise.

There is still lots to do, but finally having some level of regular support has been a great relief not just to me but to remaining friends and family. As for the financing of this I would make the case to individuals, health professionals, charities and funding bodies to give increased engagement with other therapy some serious thought.

Have you had experience of talking therapies in Powys recently, whether provided by the NHS, by the voluntary sector or privately? Or are you still on the NHS waiting list? Let us know about your experiences in the comments' section below.

Volunteering while getting benefits

The title of this blog post is also the title of a UK government guide which can be downloaded from the internet here. Quite simply it lays down the rules around volunteering whilst on benefits:

"If you’re getting State benefits, you can be a volunteer and, in nearly all cases, your benefits will not be affected. However, there are some cases where your benefits can be affected, for example, if you get a subsistence allowance or if you’re doing what someone else would normally be paid for."

And yet people who are receiving benefits are sometimes made to feel – by society, by people they know, by workers at the Job Centres they attend - that if they are able to volunteer then of course, they should also be able to work.

Jan Rogers receives benefits and volunteers for the mental health charity Ponthafren Association at the organisation’s centre in Newtown. She is not in paid employment at this time. She wanted to share with a wider audience the value of volunteering to her.

Without going into detail of what, why and where, I will just say, when I first became unwell, I could see NO way out. Well, in fact, I did find a way out and that was to end “it”. To put a stop to the hassle and grief I was causing to my family.

Sometimes I think I functioned quite well in the sense that food was always on the table and the house and children were always clean, at least when they left the house. But I wasn’t living, it was existing - going through the motions. When my husband was in work I would quickly do housework and what I needed to do and then hide. Sometimes I would lie under the bed all day watching the clock so that I would be out in time to cook tea and pick the children up. This was harder when I had younger children so I used to draw the curtains and sit and interact with the children hoping that they would not pick up on how I was feeling. This worked for a few years but every time one of the children called me “Mum” I cringed.

One day Hell had just opened its doors. I went from a person who was out going and enjoyed life to almost becoming a recluse. Although I made sure the children and hubby were fed and looked after, I was sinking into a dark, dark world. I did not bathe or eat until I was so light headed I couldn’t function. My husband gave up his job and although he was amazing he was looking for answers to the complete change in a person, which to him had happened “moreorless overnight”.

I was regularly taken to hospital and sectioned and stays varied from one to three months in the early days. As time went on, with my husband’s and family’s support, and the help of the Community Mental Health Team, I was able to function slightly better, but each day was a struggle for us all. Sometimes I would leave the house and seem and feel okay, drop the children off at school but then, a dark cloud would surround me and I had no idea where I was or who I was. My husband would phone the police after looking, sometimes all night, and I would be back in hospital on a section.

I felt my life was over and although I was lucky in a sense that I had a great supporting family, this in one way was making me feel more guilty as I was letting them down and just causing more grief to the people that were at my side and holding me up. 

Jan in the garden at Ponthafren

All I kept thinking was why, why, why?

About six or seven years ago, I took my youngest sons to football practice. I was standing on my own, not really wanting to get into a conversation with people. There was a woman there, who I did not know, she seemed to be in charge of the football sessions. I remember the day well as it was windy, cold and raining, real football weather. The lady came across and introduced her self as Nicky Morris and explained that she was chair of the junior football club, Newtown Whitestars.

We got chatting and this was the first time I had really trusted anybody outside my family. I felt I could talk to her as if I had known her for a lifetime. Nicky went on to explain that she was Co-ordinator of Ponthafren Association , which was a registered charity for people with mental health problems. She suggested I pop in for a chat and see what Ponthafren had to offer for me. I was always very much into my sport, gym and running as well as a very keen gardener.

I went along to Ponthafren with my hubby and met up with Nicky and Jane and chatted. I said I would love to come along to the centre but needed a purpose. Nicky suggested volunteering for a couple of hours a week to go along with people to the gym. So, this is what I did. Mike was always outside at least half an hour before I was due to be picked up as he was very worried.

Over quite some time, I was volunteering more hours and even though some days I would not go in as I was feeling unwell, generally I felt a small sense of achievement. As time went on Mike was feeling more relaxed and able to take a step back. He too then became a volunteer at Pont. I think we sometimes forget about the person that has cared and carried someone with mental health illness for such a long time and almost expect them to pick up where they left off in a sense. This is not reality as when Mike gave up his job he gave up his “Life”, in the sense of friends, associates and a social life.

At Ponthafren I can be myself, I don’t have to pretend at all. If I want to smile I can, but at the same time if I don’t feel like smiling or putting on a face for people, then I don’t feel like I have to.

Some of the things I deal with every day and night:

• Sense of worthlessness.
• Scrounger to society/tax payers as I should be working.
• Sense of letting my family and friends down.
• Voices.
• Hallucinations, to the degree of bathing in shorts and tee shirt and dressing inside a large robe that is zipped up the front, from my neck to the floor. 
• Not sure if I’m having a conversation with real people or not.

Some of the things I feel and have partly gained by volunteering are:

• Self worth.
• Confidence.
• Self-belief.
• Passion for believing in my principles and beliefs and the fact that they do count.
• Helping my family understand my “illness”.
• Helping “ME” understand my “illness”.
• Being “Who” I am, and most of the time thinking, “others will have to accept me as is”.

I have been nominated and won awards but although I am very grateful for being put forward and gaining these awards I personally (it has taken me years to accept praise and to be honest, deep down, I still cringe even though I smile) feel that these awards I accept are on behalf of every volunteer I know. This, I feel, is how I am able to accept them.

Why do I volunteer?

At the moment I don’t think I would be able to cope with employment. I’m not sure it would be fair on an employer or me. I have never and never will be happy with myself drawing benefits but volunteering goes some way for me to prove my worth to Government, Job Centre, tax payers. I have received, and continue to do so, so much help from Ponthafren – and this is one thing I can do to part pay back for all I receive.

I volunteer in the garden because I am a keen gardener and others get so much out of the garden at Ponthafren. Some people have no garden or in fact a seating area. With volunteering, if somebody asks me to do something, I do not have a problem asking them to write it down if I’m not sure what they said and they don’t mind doing this. As an employee, this would not be okay.

Basically I volunteer because I can. I have failed so much over the years, in most aspects of my life. Volunteering, I feel I do not fail at all. Maybe I can make a difference to someone else!!!!

‘Volunteering’ = Coping , Living, Surviving, so really it is NOT Volunteering in my Mind or Heart !!!!!!

Thank you, Jan, for sharing your volunteering story with us. If you would like to find out more about volunteering, contact the Powys Volunteer Centre which is managed by Powys Association of Voluntary Organisations.

Are you on benefits? Do you volunteer? Tell us about your experiences in the comments box below.

Oh, and there's a dog...

Sandra Ward, Information and Advice Manager for Age Cymru Powys, talks to us about older people in rural communities and her vision for help and support that could make a real difference.

Tell us about your day job

I have been an adviser for 30 years – that makes me feel very old.

It really is a strange way of earning one’s living, but it can be both rewarding and interesting. I never know what the day will bring – it can range from the sublime to the downright heartbreaking. From advising how to deal with a bee swarm lodged in a chimney, to supporting a lady of 92 coping with losing her lifelong partner and for the first time having to deal with banks, benefits and all the paperwork which follows a death.

I know we all suffer the distress of easing information from, and giving help to, those who are in a ‘bad’ place. But in the midst of these problems are lighter moments. One of my longest days was when I was with the Citizens Advice Bureau. I was helping a young family who were homeless. It was a Friday, especially relevant because one is aware that the problem has to be solved that day – nothing will be open over the weekend. Panic time then! I had spent most of the day finding this young couple somewhere to stay, and this was before the 3 young children came out of school. But at 4pm I was triumphantly standing at the door of the Advice Centre ready to speed them on their way to a booked and funded bed and breakfast. The young father suddenly turned and said; “Oh, and there’s the dog!” (An Alsatian, of course!) I often mutter to myself in times of stress - when I need a giggle - ‘and there’s the dog’!

Powys is a rural county, what does this mean for older people?

As Manager of Age Cymru Powys (formerly Age Concern) I see a great many people with problems which are aggravated by the fact that they live in a rural location. For my clients the additional rural problems are the following: difficulties in accessing help and advice; support services are either stretched by distance or non existent; lack of transport – whether that is limited public transport or simply that due to age and/or disability they have lost the use of their own transport. This of course, affects access to health services especially in Mid Wales where we are often sent to Telford for hospital appointments. All these limitations can cause acute loneliness – something the majority of the people I speak to suffer from. My job in Powys is almost completely different to that of an Information and Advice worker in an urban area where supporting services are near at hand.

Powys (my patch) is the 9th most rural county in the whole of the United Kingdom and the least most populated in Wales. The average population in Wales is 147 people per square kilometre, in Powys it is 26. Also we are ¼ of the area of Wales, so some of my outreach service advisers can travel for 1½ hours just to get to their destination. So you see I really do know about rural poverty.

Is there anything causing real concern to older people in Powys at the moment?

At present we are finding that the Government Welfare Reforms are causing us a great deal of work. Don’t get me wrong, I agree that a fit and able person of working age should be employed. It is only when knowing that one is valued and worthwhile that you gain self respect and self esteem. However, if you are 50+ and have health problems – maybe a stroke or an accident at work; you are actually less likely to be able to work. Possibly the job you trained for and have always done is now physically beyond you, so your whole life has to change. This is fine if you are fit, alert and mentally able to cope with complete change, but if you are depressed and unwell to suddenly find yourself in a minefield of forms and interviews it becomes impossible to find the impetus to navigate onwards. My colleagues and I help them do this and it can be both difficult and very, very sad. People are angry because they can’t work at their chosen trade, depressed because their life has changed for the worse and very frustrated that the Welfare State, far from helping them, seems intent only on making them slot into a ‘fit for work’ category.

I had a client, a gentleman of 64 who had previously worked on the land; he had had a stroke and was quite disabled. However, he was found by the Employment and Support Allowance Team to be fit to do office work. This chap was unable to use one side of his body and was incontinent. I explained the ruling and possible options for him. He sat quietly in my office, then said; “I would rather be dead than sit in an office smelling of urine.” This man had worked constantly for 35 years and had never expected to rely on state benefits. Not the type of unemployed scrounger that some of the politicians and the popular media portray. I am on a few national committees, not because I have the time but because people like that man are unable to verbalise their frustrations – but I try to make their feelings known and understood.

What other challenges do you face in Powys?

The challenges of communication both in reaching those who are vulnerable and for older people to participate in social activities are vast. Public transport is very limited, many of the bus routes are weekly services or limited to one or two buses a day – a large number of villages are not visited at all. We have recently lost even more of these routes. Over ½ Powys households are classified as being in area 8, ranked the worst 10% in Wales for access to services on foot or by bus.

Interestingly we also find that language causes a barrier. We run a bi-lingual service but find that the majority of our work on the Welsh border is requested in English. As we ‘go west’ across the county it becomes more predominately Welsh. Because my main office is in Newtown some people consider our service ‘English’ and hesitate as to whether they would find help there. In fact some of my ‘main language Welsh’ clients are additionally vulnerable because they have scant knowledge of the help they could access.

I have over the last 5 years piloted and run an elder abuse project for Powys County Council. I chose primarily to visit Lunch Clubs because these are the older people who are just coping but needing some support and therefore beginning to be at risk. It involves a positive and upbeat talk; firstly about older people’s rights – such things as ‘You have a right to be wrong!’ So many elderly people keep silent, terrified that if they make a mistake they will be ‘put in a home’. We fight to give them control over their lives, without making the judgement of ‘what is best for them’. We then go on to discuss scams and abuse, in an open and safe environment. Sadly 60% of the 300 people I spoke to had been a victim of scams or abuse. If people are living in isolated rural areas they are far more likely to be at risk of unreported abuse. There is a desperate need for our advice service to reach these isolated and vulnerable people.

How would you like to be able to help older people in Powys more?

I started thinking about the problem from the bottom up, so to speak! I am involved in rural church life and have been for my whole life. As a child our church was the hub of our rural community and many problems were supported therein. Now I believe this supporting network has changed – the age range in our communities is unbalanced. Despite all our best efforts to attract the young, many of our congregations are made up of older people. A few of the more successful churches use their buildings completely and offer crèches, welfare advice and community projects like cafes.

I had this in mind when I thought about my new project. As advice workers we need to be out there helping the lonely and vulnerable but I cannot sanction the expense for my advisers travelling 80 miles for a home visit, even if it is essential. So I thought that if I had a volunteer in each community and a paid adviser in a main office, whether it be Newtown, Llandod or Brecon then the volunteer could listen to the problem and phone for advice. The Bishop of Bangor informed me that the Church in Wales is keen for their buildings to be fully utilised - so churches, and maybe chapels, community centres and schools could be used at set times every week. My plan is that this would form a network of people to be a core community and therefore support their population who were at risk or in need. I’m just at the stage of trying to get funding for this but hopefully it could plug a little hole in the dyke!

What I see at present is that many people living in rural areas are being subjected to increasing stress and anguish as a direct result of decisions made in Westminster and elsewhere. It is necessary that we speak out – without prejudice – to inform those whose upbringing and life style leave them ignorant of the challenges of rural Wales. Reaching those who need help remains my priority and frustrating though it often is, I feel very privileged and honoured to be in a position to attempt this.

If you would like to discuss this idea with Sandra or offer her some support, you can get in touch with her on 01686 623707 or sandra@acpowys.org.uk or leave a comment below.

White Rabbit Number Six: John Drake's Mental Health Blog - 2

2. I Am Not a Number

Going to the Job Centre when I was too ill to work seemed like a contradiction in terms – but this was the brave new world of New Labour and quite a lot had changed in the twenty years since I had last needed to claim any sort of state benefit, as I was soon to discover...

I will skate over the many mistakes that seemed designed to disorient me (the person on the end of the phone who told me that he couldn’t register me unless I could remember the postcode of the flat I lived in twelve years earlier – and then sent all my information to the wrong address anyway; the meeting in the open-plan Job Centre where I was asked how my depression affected me on a day-to-day level – as if my doctor would give me a consultation in the waiting room; the letter from the DWP telling me to send them a sick note by a date two months prior to the date of the letter)...

I realised that I had, in fact, fallen to the bottom of the rabbit hole and was now in Wonderland.

The good news was that I was referred to the government’s back-to-work programme. I was obliged to see an advisor for five sessions – and ended up seeing him every month for a year and a half because I found him so helpful. He did his best to make sense of the system for me... but there was still the hurdle of the Work Capability Assessment to be overcome.

I was interviewed by an elderly gentleman who I assumed was a retired GP. It was all over very quickly. He asked me some questions that seemed odd – such as what did I watch on TV? (Films and documentaries mostly, not that it’s anyone’s business) – but nothing at all about my symptoms, what had happened in work or what was stopping me going back.

To be honest, since I spent most of the 20 minutes I was there in floods of tears I assumed that he didn’t want to prolong the agony by asking unnecessary questions.

How wrong I was!

A month later I was told to attend a follow-up, work-focused interview, with the same doctor who assessed me the first time. He seemed surprised when I told him that I hadn’t received the results of that assessment yet, but said to put it down to bureaucratic bungling.

When another month went by and I still hadn’t got my result through I started to get very anxious and asked my advisor to help. He made a few phone calls and gave me the bad news. I hadn’t scored enough points to stay on Employment and Support Allowance (ESA) and I shouldn’t have been asked to attend the second interview.

A week later I got the official result through the post. The doctor had assessed me as finding life difficult due to being unable to cope with unexpected changes and had awarded me 6 points, 9 less than I needed to stay on ESA. I would no longer receive any benefits and had to talk to my employer about returning to work.

This “talk” had better be quick, since I now had no money coming in, but it was pointless anyway. There was no way my employers would allow me back to work without the say-so of my GP and there was no way she would pass me as fit for work... Desperately confused, I contacted my advisor who told me I should appeal since the decision was clearly wrong; and helped me draft the letter. At the worst, I would still get sickness benefit until it went to tribunal.

As it happened I didn’t need to go to tribunal because I got a phone call one day from someone who worked for the Department for Work and Pensions (DWP) who, after going through each of the reasons why I thought the assessment was wrong, told me that the decision would be overturned. About a month later I was told officially that I had been placed in the work-focused group, my benefit was increased and I also got a hefty back-payment.

Now that I was starting to feel a bit better about my situation, my advisor came with me to meet with my employer and negotiated some part-time work that I could do while still claiming ESA.

A year went by before they wanted to re-assess me. By now, the back-to-work programme had come to an end and I was no longer in touch with the advisor. Worried about the new assessment, I started obsessing about what had gone wrong the first time. Why had the doctor only given me six points? Things were not helped by watching the remake of ‘The Prisoner’ on TV. Perhaps I was Number Six, prisoner of a bureaucratic bungle that had turned into a nightmare...

Fortunately, just at that point along came Do-It-Yourself Futures...

White Rabbit Number Six: John Drake’s Mental Health Blog - 1

As the DIY Futures project comes to an end, the focus is on the stories in the book "It's the inside that matters," which have drawn some really positive feedback. But there are so many stories out there, and one book can never be long enough...  So when we heard about John Drake's experiences recently we invited him to write a guest post for the blog.  John soon came back to us with not one but three posts! Here is Part 1... with 2 & 3 due to follow shortly.

1: Down the Rabbit Hole

There is nothing so very remarkable about falling down that very deep well we call depression. What follows is just one man’s experience...

It was quite a relief when I was first diagnosed with depression. My initial reaction was: Thank God for that, I thought I was going mad! I was certainly getting fixated on some strange ideas and experiencing overwhelming feelings of dread which made it difficult to continue to work...and I loved my job.

My GP referred me to a Community Psychiatric Nurse. He assessed me as suffering from mild to moderate depression and recommended a short course of anti-depressants. But I was very resistant to the idea because I had heard so much about the bad side effects... Fortunately the nurse was very sympathetic to my attitude and suggested I instead try St John’s Wort (a herbal alternative to pharmaceutical medicine). My GP was also supportive of this and said that I should treat it like any antidepressant and use it regularly for six months.

After three weeks I felt well enough to go back to work and in fact, with the aid of St John’s Wort, I managed my condition for the next seven years, throwing myself into my work with renewed dedication. I still suffered from occasional bouts of anxiety but I knew that I had to just keep going...

Until one day I couldn’t... It was as if an abyss had opened up and I was about to fall into it.

I rang the surgery but my GP wouldn’t be available for a couple of weeks! I knew I had to talk to someone straight away and fortunately one of the other doctors had a cancellation and was able to fit me in. She listened to me for what must have been quite a long time (once the dam broke, the flood was overwhelming), signed me off work and referred me to the counselling service that was attached to the surgery.

And now that I was in safe hands, I could let myself fall...

I was offered what I understand to be the standard counselling service through the NHS, which is six sessions of Cognitive Behavioural Therapy. Towards the end of this period I was offered an extension of three further sessions, which I was happy to accept. When I first began therapy, my counsellor assessed me as having moderate to severe depression. By the time I finished the course, I felt ready to return to work. Although our sessions were coming to an end, the counsellor assured me that if I ever needed to see him again I could get a new referral through the surgery.

Throughout these first few months of illness, I had felt very well supported both by my counsellor and by the GP. At her suggestion, I continued to be seen exclusively by the same doctor who had been available on that crucial day – and I think that this continuity of service was very important in my being able to cope with day-to-day living, without being hospitalised – which, along with being forced to take antidepressants other than St John’s Wort, was my biggest fear. Rightly or wrongly, I believed that pharmaceutical antidepressants would take away my mind and that, once in hospital, I would never come out again.

The CBT sessions had taught me how to cope with going to shops and facing the dreaded ‘how are you?’ question from well-meaning acquaintances, but going back to work was another matter. Even though I had met with my boss and we had agreed a back-to-work strategy, it all fell apart when a personal crisis caused everything to unravel – and I was back almost, but not quite, where I started – still down the rabbit hole but resting somewhat precariously on a ledge – no longer falling, but not yet able to climb out.

This time my GP was adamant that I should take stronger antidepressants – but I was equally adamant that I wouldn’t. To her credit, my doctor accepted my decision and continued to support me in other ways. I was referred back to the counselling service and, this time, I was told that I could book a session whenever I needed it, through the appointments desk. I assume this was offered to me as my counsellor believed that I wasn’t the type to abuse the privilege – and in fact I only took advantage of it a handful of times.

Throughout this time I felt that I was being supported in the way that was right for me by everyone concerned in my welfare – and for this I will always be grateful.

Meanwhile, however, I was still being signed off work. Then one day I got a bit of a shock when the finance officer informed me that my sick pay had run out and that I needed to contact the Job Centre about claiming long-term sickness benefit.

And that’s when my problems really started...