Hi, my name is Jane Danforth. I work as an Involvement Officer for Nottinghamshire Healthcare NHS Trust. It’s a huge integrated mental health, learning disability and community health services organisation covering Local and Forensic services, Community Health services and Offender Healthcare. It’s my first time writing a blog on the Patient Opinion site. I hope you will find it interesting.

I’m really lucky to work in an organisation that supports an Involvement team with two Involvement Centres. It’s true to say I am blessed with great support from the top of our organisation; Professor Mike Cooke CBE (our CEO) my manager and also from Trust colleagues and Patient Opinion (PO)

How can I describe the PO team and what they offer to us? Well, for one, ‘real time’ feedback is starting to change the way we do things in the Trust. 2011 has been the best year for us yet. We were named as Pioneers of the Month for PO last year and we held the record for the fastest posting and response times of any Trust! We get Facebook and Twitter posts about us leading the way for patient feedback and it’s made my job so enjoyable. It has done our Trust the world of good and given us a platform to prove that our ‘Positive’ brand is not rhetoric and spin. PO has made a difference and offered value for money to the organisation. People say how much they like it and find it a great way to share how they feel about our services and what they would like to see get better.

Open and honest feedback sometimes means you have to take a deep breath and think hard about how you are going to respond to stories that are not always complimentary. The support of a great Communications Team makes all the difference. Julie Grant, Head of Communications is my sounding board and someone I can go to when challenges arise. Equally Sam Eagling, managing PALS and Complaints (Service Liaison) helps complete the circle of communication. I know that between us we can help to make things happen and people posting on the site get their voices heard. Things actually can change for the better and we have seen it happen ‘before our very eyes’!

I’m really pleased to say that the majority of our feedback is complimentary. I know staff get a real lift from postings that praise what they do and when we can’t always do what people ask, we can at least explain why some things are the way they are. I really believe it can stop people taking things further when issues arise and over next year we are going to try and evaluate this.

Our involvement volunteers take on many different roles. This year and in 2012 we will continue carrying the Olympic torch for PO.

Our PO Champions are making a difference using a ‘pass it on’ philosophy. Champions are made up of service users, carers, families and staff including Governors. For everyone they tell about PO they encourage others to tell someone else. Word of mouth is a powerful marketing tool, if you are good you can get always get better and positive feedback is a massive motivator. Equally when feedback is not good you have to listen and work together to resolve issues.

Next month I am going to tell you more about our iPad pilot. We launched a trial across the Trust in Local and Forensic services and believe me it’s been an exciting time! To be honest, It has increased my workload initially but it’s also given me such a buzz when I can see staff becoming responders and our youngest ever posting was from a 10 year old using our child and adolescent mental health services and in case you are wondering? Yes it was positive!

In January, we will be looking forward to the year ahead. My manager Paul Sanguinazzi, Head of Involvement, is keen that we really focus on getting a seamless reporting system that pulls together all our feedback in the Trust.

Other Trusts have started to ask me how we work with online feedback and I look forward to February 9th where we have been invited to speak at the regional PO event in Sheffield about how we have made it work for us in Nottinghamshire Healthcare.

And finally, I would like to share with you a letter of thanks that was given to me at the beginning of the week from a patient who was being discharged. This posting made my year: A letter of thanks for the staff on Ward B2

Two fascinating stories have kept us talking at PO HQ this week, both incidentally linked by their intimate, hard-hitting honesty.

Firstly, we were struck by the story of Joy Tomkins, an 81 year old lady who has had 'Do not resuscitate' tattooed to her chest. An unusual decision, inspired by a retired nurse who did similar back in 2003, and one that undoubtedly demonstrates the conviction behind this lady's decision.

She resolutely states that she could not bear to "make beds and wash-up for another 20 years". "My mother-in-law lived to be 106 and in the last six years of her life she'd have been much better dead. She was miserable. I'm 81 and don't need any more use. What do you think I'm going to do with the frightful thought of getting to 100?"

I was quite taken by the way Joy speaks about her life, and her absolute acceptance of death. She far from wishes it upon herself, but accepts the inevitable and sounds entirely fearless. "I've had 80 good, interesting years of marriage and children and grandchildren and plenty of friends"she said. "I'm quite happy if I wake up in the morning, but if I don't I'm just as happy."

In a world obsessed with prolonging life, I find it refreshing to hear Joy speak of her appreciation for the healthy years she's had with her family and her calm and resolute approach to death.

In a similarly frank and honest way, Gail Porter spoke this week on Radio 5 about her experiences of being sectioned earlier in the year, and the residual anger she still feels. Gail was sectioned to a secure ward for 17 days, during which time she had very few visitors (at her request) and says the experience has had a profound impact on her. Gail goes on to say that on release she remembers thinking "what was that supposed to have done for me?" and for a long time resented the people who made this decision for her.

As Patient Opinion, we receive lots of stories which detail highly emotional and distressing forced admissions to inpatient care and it's always been fascinating to hear how people feel a little later down the line, at a point where they reflect upon what happened to them and how it made them feel. In that respect, Gail's story has a strong message.

She feels that secured inpatient care wasn't what she needed and that the treatment she received and separation from her family, particularly her young daughter, made her more unwell. She speaks calmly and thoughtfully about the whole experience, and I'm glad to see that she looks happy and healthy.

Gail's words got me thinking about the stories we have, and how important it is that people are supported to express their wishes, especially at the most difficult times and make the right decisions for them. Feeling empowered and confident enough to say what you feel you want and need from health care could really make all the difference.

One of the great things about building a platform like Patient Opinion is that people are always finding wonderful new of ways to use it that we have never thought of. Like the young couple using an addiction service who had a baby just 5 weeks old. They had had a few slip ups and used a bit of this and that other than their prescribed methadone. Terrified of having positive urines and loosing their beautiful new baby they could not ask their drug workers because then the cat might have been out of the bag. But at the same time they desperately wanted help.

The answer turned out to be sharing their story on Patient Opinion. They could see that the clinic was run by  PCAS who had a great record of responding to other requests on Patient Opinion, so they posted their story anonymously but publicly. That way they could get find out whether coming clean would end up with them loosing their baby. What is more everyone else can see the response too – which may be reassuring to other mums-to-be with an addiction problem. And one more vulnerable couple and baby helped to keep going, to not give up. 

Generic responses won’t do in these circumstances. Patients and service users need to know how this clinic, this medical director would handle the situation, not what NICE or the PCT recommends. And they will use the quality of the response to decide whether it’s to be trusted or yet more corporate speak.  Of course it’s not just substance misusers. If I had to have a coronary bypass graft, I’d want to know what the surgeon's mortality rate was and how many of these operations she did per year. But being British I’d be probably be too embarrassed to ask. But I would be happy to punt the question on Patient Opinion anonymously. And may be get an answer that helps everyone using that service.  

May be confidential conversations that can only be asked in public will turn out to be really common. And important.

Today we officially launch our mental health platform. Of course, people have been sharing stories about mental health services for a long time following our pilot in the 5 Boroughs Partnership back in 2007.

We're hoping lots of people hear about what we're doing and share their story. Jason, who's just joined the Patient Opinion team, is an ex service user and volunteer at primary care addiction services in Sheffield and has an inspiring story to tell about how the independence and honesty of Patient Opinion was crucial in bringing about change in addiction services. Even we're impressed listening to him! We captured him on video and the Society Guardian went one better and put his face on page 3 yesterday. E-health insider ran a story this morning and we know many regional and local papers and radio stations are picking up on the launch today. Phil Hope, Care Services Minister offered his support saying "This partnership means every single Trust in the country can see what they are doing well and what needs to be improved, helping to drive up quality."

Through the course of this year, we've been travelling the length and breadth of England talking to staff and users about what this will mean, how we're doing everything we can to keep the system safe (on both sides) and how the system will lead to real service improvement. It was important to us that we equipped staff with the understanding and skill to communicate directly and honestly with service users, their families and carers through the website . Much more importantly, we wanted to be sure that they knew how to take the comments, suggestions and concerns they would hear and do something meaningful with them. After all, that's what we're all about - making people's experiences count. According to Maria, Head of Service at the 5 Boroughs Partnership during our pilot, the stories she received through Patient Opinion 'made issues real' and gave her the opportunity to 'facilitate some real reflection among staff'. And we have lots of examples, across mental health and acute care, where trusts have demonstrated through their responses on the site that they're truly listening and taking value from peoples stories.

From past experience we know just how honest, passionate and thoughtful people can be on Patient Opinion. We also know that sharing their stories on the site can lead to real improvements in services. What we don't know is what you think of your local mental health services so please share your story and make a difference.