Life on the ward: the patient's voice

This week Rhydian Parry tells us about volunteering with Powys Patients’ Council at Bronllys Hospital in South Powys.

I have been a volunteer with Patients’ Council for about a year and a half. I have first-hand experience of what life on the ward is like, having been a patient at Bronllys several times over the past eleven years. I know how tough life can get on the inside and how big an impact seemingly trivial stuff can have. I’m lucky to be in a position where I can try and use my experience of being on that ward from the age of 17 to help others and ensure that the voice of the patients at Bronllys is heard and represented.

We had a very productive meeting last time on the 11 December. It gave us a huge amount of information to take forward and highlighted the importance of some issues that have been consistently coming up. Some are in the process of being dealt with at the appropriate levels such as the lack of activities on the ward. It is an issue we have been working closely with senior and ward managers for a while and are now at a stage where discussions are taking place with Brecon and District Mind (formerly Brecon & District Contact Association - “the Loft”) amongst others to provide structured activity on the ward, as well as some in the community.

The need for a quiet room is another prevalent issue which, sadly, still has not been sorted. We are currently waiting for the walls to be painted; this needs to be done before anything else in the room and is holding the whole project up. I just hope that work can begin soon.

Many people raised issues around the weekly case conferences. It was felt that these were already very intimidating and asking whether patients minded student doctors being there when arriving was too late. People found it very difficult to say 'no' face to face with the students. Having a tick box on the pro forma was suggested by a patient and passed on to the ward manager. She agreed that it was a good idea and will be adding one to the form straight away.

Concerns were also raised around a perceived neglect of patients’ physical health. These were passed on and I was informed that a ward-based doctor was due to start on 23rd December. This will hopefully alleviate the situation somewhat.

It's also important to recognise some of the actions that have been completed over the past year. Good examples of these are having a decent TV, wall mounted and working well making a big difference to the dayroom, and the Mobile Phone Policy. Patients had only very restricted access to their phones and it was a difficult issue to overcome. But, after a lot of hard work, we now have a new Mobile Phone Policy which does allow patients to have access to their phones.

I would also like to thank the staff on Felindre ward at Bronllys. Not only do we hear a lot of good things said at meetings (although people would love more staff!) we are made very welcome when we visit, ensuring we have the ideal room and we also have a healthy working relationship. Without effective co-operation positive action and changes would be very hard to come by.

Many thanks to Rhydian for his insight into the Patients’ Council operating out of Bronllys Hospital in the South of Powys. Patients’ Council aims to give a voice to Powys residents wherever they are offered acute in-patient mental health services - you can find out more, including meeting notes, on our website. And more good news - some of my colleagues are currently working to develop a similar arrangement to give a voice to patients in the North of Powys.

How important do you think it is for patients to have a voice?

Citizen Power, Active Participation

Blog by Freda Lacey, Powys Association of Voluntary Organisations (PAVO)

The Person in the Arena – Theodore Roosevelt    

"It is not the critic who counts; not the person who points out how the strong …stumbles, or where the doer of deeds could have done them better. The credit belongs to the person who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends themselves in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if they fail, at least fails while daring greatly, so that their place shall never be with those cold and timid souls who neither know victory nor defeat."



24th October 2014.  Left to right, back row;

Rhydian Parry, Neil Saunders, Kate Van Den Ende,

Steve Hails, Liz Hails, Phil Pashley, Meriel Richards,

Phil Moisson.  Front: Freda Lacey, Lotte McGregor,

Ali Lloyd-Jones, Michelle Willingham, Jill Dibling

On Thursday,  24th October, I gave the above quote, a personal favourite of mine (one which has boosted me many times during some of my darker days) to a group of twelve enthusiastic, devoted citizens of Powys, who came together for the day with me to discuss active participation on local and national Mental Health Partnership Boards. 

 

 

 

 

The Road Trip

This meeting was the culmination of a long road trip across Powys over the last few months, engaging with people in local groups, teams, towns and localities.  I gleefully sent out some photos to my family of my journey to work that first day of travel, captioned, “my road to work this morning”.  I feel incredibly lucky to live in a county and drive roads which take me to views like this in the work I do. 

My mission? 
To inform and encourage people to participate at our annual Stronger in Partnership conference, this year entitled, “Shaping Services Together”.  People would get to meet with Jacqui Dillon, a well known activist and public speaker on the de-medicalisation of mental health distress and chair of the “Hearing Voices Network”, actively participate in speaking up about the impact of the UK Welfare Reform (workshop video here) and meet with key decision makers locally and nationally to report on personal experiences (watch out for a subsequent Blog on this topic!). 


Welshpool Outreach - Ponthafren

They would also get to speak directly with members of the relatively new National Partnership Board driving the “Together for Mental Health” strategy and delivery plans across Wales.  People would also learn more about how to actively engage and participate in shaping mental health services (you can access their talk here), locally and through a newly forming National Forum for citizens in contact with mental health services across Wales.  


Llanidloes Outreach - Ponthafren

I combined visits to local mental health voluntary services/groups and statutory mental health staff/teams closely in contact with people who have been diagnosed with "mental illness". 

My journey took me to places such as Machynlleth and visits with Mind Aberystwyth’s “UsMach” and a local counseling services called “The Listening Point”.  To Llanidloes’ Mental Health Outreach Group, Welshpool Mental Health Resource Centre, both managed by Ponthafren Association.  
 

Older People's team, South Powys

Newtown’s Mental Health Resource Centre (managed by Ponthafren Association), Builth Wells Mental Health Outreach Group and Llandrindod Wells Resource Centre, through Mid Powys Mind, Brecon and District Mind’s (note new name), Mental Health Resource Centre.   Bryntirion’s multi-disciplinary team of social workers, community psychiatric nurses and team leaders in Welshpool, multi-disciplinary staff team at Ty Illtyd in Brecon, the older people’s multi-disciplinary staff team gathered at Bronllys Hospital and the multi-disciplinary staff team at The Larches in Ystradgynlais.

This event was also going to uniquely focus on “across all ages” and we actively worked with the Participation Team working with the Powys Youth Forum and Tros Gynnal, who provide Children’s Advocacy, to get their involvement.  Several young people came, with the support of these two local organisations and they worked with Theatr Clwyd on a workshop to put across their points/issues to the audience.  There was also quite a bit of audience participation as you can see in the picture here and below.

We had over 120 people registered for the event here in Powys which happened on September 19th and the momentum for people to get involved in shaping mental health services, both locally and nationally, has continued since then with great interest.  It feels as if a great shift is happening with people really wanting to become more actively involved, raising their voice, campaigning for the rights of individuals (and themselves) to be heard.  People are passionately wanting to help change the way services are delivered so that they have the services they need, when they need them.  It is interesting that this is strongly aligned with the Welsh Government’s drive to involve more citizens in public consultations, engagement and participation at all levels.  For a list of the most recent opportunities to get involved, please visit this page on our website.

This all brings us to last Thursday’s day at Gregynog Hall, where originally, fifteen people had put themselves forward as interested in coming together to discuss active participation and representation on the Powys local Mental Health Planning and Development Partnership and the National Forum. Unfortunately, three people were unable to attend on the day due to unforeseen reasons. 

The local partnership board is a requirement, as part of the strategy for Mental Health across Wales, and each of the seven health boards in Wales need to create such a partnership.  They are also required to have people in contact with services and those close to them as active members on these partnership boards.  There are no minimum or maximum numbers, but most Boards have over four people as active members.  In Powys, we have three people who can participate on the partnership at any one meeting.

There were six people who organically fell out of the day’s selection process, but three others who really wished to participate, but were unsure of their abilities and perhaps lacking in some confidence.  The group, as a whole, really wished to encourage and support these three people to be actively involved and so they wished me to see whether the three people participating on the local partnership could be pulled from a pool of nine people.  The remaining three people all wished to be very actively involved in supporting the local and national engagement process.  Nine people from Powys will actively be part of the National Forum that is forming and this will consist of over 50 people from across Wales.

Jo Mussen (right) Vice Chair Powys teaching Health Board & Jackie Newey, PAVO

The nine people are a good mixture of people who have varied and diverse experiences.

It will be one of the widest, most diverse groups of people to ever come together, with one common purpose.  This is to ensure that those in contact with or close to people who have experience of mental health services in Wales are valued as equals in shaping mental health services for the future, that they are consulted, valued, actively involved through meaningful dialogue, ensuring that this is not tokenistic.  This Forum will also choose the four people who will participate on the National Partnership Board.  Importantly, communication to and from the National Partnership Board on issues affecting people and progress on key areas of interest in terms of service development and action, needs to be whole-heartedly carried through this Forum, by this Forum to local networks, groups and citizens represented from communities across Wales.  In this way, a strong, inter-dependent link will exist between local citizenship and Welsh Government, in relation to mental health and well-being.

Community Mental Health Team, Brecon

The ongoing challenge remains how we actively engage, communicate and dialogue with the silent majority of people, whose voice may not yet have been heard and indeed, who do not wish to participate via membership of a forum or board, but who do want to actively contribute and be heard.  Further development of local groups, local mechanisms for ensuring active participation is facilitated and helping forge meaningful connections are next steps for the group who met at Gregynog, as is utilising the widest and most innovative means possible to engage with people. 

Along with supporting this group, my role requires me to be mindful of linking opportunities for involvement in services with people with particular interests or experiences.  Most recent examples of this include: linking an individual in Newtown with Department of Health, Expert Reference Group meetings in London, reviewing the Mental Health Code of Practice and we’ll ensure that we are involved when/if the Welsh Code of Practice is also reviewed, ensuring individuals who have experience of being detained by the police (in relation to mental health distress) are linked in with a two year research project headed by the University of Bangor into Police practice, linking people with the group overseeing the implementation of the Mental Health Measure (Act) across Wales and seeking to involve people in the formation of the Powys Psychological Therapies Management Committee.

Finally, I shared with the “Twelve” a poem which means a great deal to me.  It is called “To Risk” and you can view it here on our website.  It felt right to hand people this poem before they attend the first meeting of the Powys Mental Health Planning and Development Partnership in December and the National Forum in November.  It may help if you’ve never gotten involved in participating before. 

 
So, if you wish to join in, get actively involved and have particular interests or experience in different aspects of services that makes you think you can make a difference for others and/or for yourself, please email me at Freda.Lacey@pavo.org.uk or ring me on 01597 822191 for further information.

By Freda Lacey

Jacqui Dillon heads to Mid Wales

I’ve just finished reading a brilliant book called – "Agnes’s Jacket" by Gail A. Hornstein, Professor of Psychology at Holyoke College in the USA. It’s about Gail’s investigation into people’s experiences of mental distress, and at times it reads more like a detective story than an academic piece as with as open a mind as it is possible to have she enters and explores “a vibrant underground network of ‘psychiatric survivor groups’ all over the world.”

Jacqui Dillon features prominently in the book as the Chair of England’s Hearing Voices Network – Gail’s enquiries take her to many of the HVN meetings and events. At one Jacqui says: “I have come to view hearing voices as an adaptive and creative strategy, an example of the persistence of the human spirit to survive in the most extreme circumstances..... My hearing voices was a perfectly natural response to the sadistic torment I experienced. Psychiatrists should stop asking, what’s wrong with you? And start asking, what’s happened to you? That’s what we do in HVN support groups.”

I’d come across Jacqui online before, as she features regularly on a favourite website of mine - Mad in America – but search online for any information about hearing voices and her name soon crops up. Jacqui is “a respected campaigner, writer, international speaker and trainer specialising in hearing voices, ‘psychosis’, dissociation, trauma, abuse, healing and recovery.” And her own website is not just an excellent resource for anyone wishing to find out more about the hearing voices movement, but tells a powerful personal story – “of surviving childhood abuse and subsequently using psychiatric services (to) inform her work.... she is an outspoken advocate and campaigner for humane, trauma-informed approaches to madness and distress.” 

So I was delighted to discover that Laura had booked Jacqui as the keynote speaker at the Mid Wales national Stronger in Partnership event (“Shaping Services”) on 19 September in Llandrindod Wells. This event is one of three organised by our Powys Mental Health team here at PAVO and funded by Welsh Government and Public Health Wales. Individuals, carers and staff are invited to share their experiences and views about services, and find out more about what is proposed nationally. (Last year’s event was in May 2012 in Newtown - Eleanor Longden spoke inspirationally - you can read more about the day here).

Laura tells me that this year’s themes are:

• All age participation – to fit with the national and local mental health strategies.
• Children and young people feeling more confident to support each other through mental distress (for example, self harm, hearing voices, sadness, and anxiety).
• Welfare Reform – how are the changes affecting people in contact with mental health services and those close to them? What can we do to make a positive difference to improve their experiences?
• National and Local Mental Health Partnership Board Strategy, Implementation and Participation. 

You can find out more about the conference here. So many interesting issues and topics to discuss, AND Jacqui’s keynote talk….

And so, back to Jacqui… The Hearing Voices Network has joined the debate which has been active on here lately - about the medicalisation of mental distress. Jacqui writes, as Chair, that “psychiatric diagnoses are both scientifically unsound and can have damaging consequences..... People who use services are the true experts on how those services could be developed and delivered; they are the ones that know exactly what they need, what works well and what improvements need to be made. This is not just an academic or professional issue – it’s one that affects our lives.”

So, for anyone interested in pursuing this debate – make sure you book your place at the event as soon as you can - BOOKING NOW OPEN HERE – a quick reminder of the date as I can hear the rustle of paper diaries and clicking onto online calendars….., that’s Thursday 19 September, The Pavilion, Llandrindod Wells, and we really hope to see you there!

Any queries, just get back to us – as always – by commenting below or emailing: pamhinfo@pavo.org.uk, or ringing 01597 822191 or 01686 628300.

Do we have a right to our mobile phone?

OK, so you’re in hospital and you want to ring your Mum, or your brother or your best mate… but you can’t, because the staff have confiscated your mobile phone. And you can’t borrow another person’s mobile phone on the ward, because everyone’s mobile phones have been taken away and locked in the office.

It doesn’t seem likely in 2012 that this situation could arise, but on a mental health ward at Bronllys Hospital in South Powys, this is the reality. There is a free phone available in a private room for patients, but this is a 12 bed unit, and queuing for a chance to use the phone is hardly spontaneous… Besides, how can you possibly predict when someone might want to ring or text you?

For two years now staff, patients, carers and others have bounced two conflicting rights backwards and forwards:

1. The right to access your own mobile phone when you wish to make and receive calls and texts.
2. The right of others on the ward to privacy (did you ever come across a mobile without a camera these days…?)

But so far no balance or compromise has been reached. And every month at the Patients’ Council meetings patients ask for their phones to be returned, but nothing changes.

The relevant law around this is contained in The Code of Practice to the Mental Health Act 1983, and states in Section 16, Privacy & Safety:

“Given that mobile phones provide a readily available means of communication with family and friends and are in widespread use, most detained patients are likely to have one. It is unlikely to be appropriate to impose a blanket ban on their use except in units specifically designed to provide enhanced levels of security in order to protect the public.”

You can read and download the Code of Practice here.

There is also a useful NHS document called Using mobile phones in NHS hospitals which you can read and download here. This states early on:

“The Department wishes to reflect the rapidly developing principles of patient choice in the matter of mobile phone usage. It therefore considers that the working presumption should be that patients will be allowed the widest possible use of mobile phones in hospitals, including on wards, where the local risk assessment indicates that such use would not represent a threat to:

• patients’ own safety or that of others, 
• the operation of electrically sensitive medical devices in critical care situations,
• the levels of privacy and dignity that must be the hallmark of all NHS care.”

The Stronger in Partnership Network in Powys is working to change the approach to mobile phone usage at Bronllys Hospital. In gathering feedback about the Aneurin Bevan Health Board mobile phone policy which covers the mental health ward at Bronllys, a patient who had previously attended another unit said about using her mobile phone:

“….this was a vital form of contact and normality for them (my children) and me, allowing some control over the situation on the home front whilst also decreasing that sensation of loneliness and isolation.”

A mother of someone who had been on a ward at Bronllys Hospital said:

“…This is a step back into the dark ages - when mobile phones are part of most people's life style with music, photos…. and an important means of contacting friends and family. Patients at Bronllys are denied that right presumably because they don't have the same needs as other people!!!”

In other areas of the UK patients are allowed mobile phones on mental health wards if they promise not to take photographs or videos without seeking permission first. If they break the rules, their mobile phone can be removed. Fair enough -  life is full of rules. And we all pay the consequences for breaking them. But we aren’t punished before we break them.

Why is it so different on a mental health ward? Let us know what you think.