1. Patients (our) rights and voices Mike Hamilton Integration Development Officer Patient Opinion

2. I will be seen as a trouble maker..

3. Nothing will be done …

4. What difference will it make?

5. Article 19. Everyone has the right to freedom of opinion and expression; this right includes freedom to hold opinions without interference and to seek, receive and impart information and ideas through any media and regardless of frontiers. The Universal Declaration of Human Rights, United Nations Some of our rights come from…

6. Article 21 - Freedom of expression and opinion, and access to information States Parties shall take all appropriate measures to ensure that persons with disabilities can exercise the right to freedom of expression and opinion, including the freedom to seek, receive and impart information and ideas on an equal basis with others and through all forms of communication of their choice, as defined in article 2 of the present Convention, including by: a) Providing information intended for the general public to persons with disabilities in accessible formats and technologies appropriate to different kinds of disabilities in a timely manner and without additional cost; b) Accepting and facilitating the use of sign languages, Braille, augmentative and alternative communication, and all other accessible means, modes and formats of communication of their choice by persons with disabilities in official interactions; c) Urging private entities that provide services to the general public, including through the Internet, to provide information and services in accessible and usable formats for persons with disabilities; d) Encouraging the mass media, including providers of information through the Internet, to make their services accessible to persons with disabilities; e) Recognizing and promoting the use of sign languages. Convention on the Rights of Persons with Disabilities, United Nations

7. It also provides a right to give feedback (both positive and negative) or comments, or raise concerns or complaints about the health care they have received. The Act also requires that Health Boards encourage, monitor and learn from the feedback and complaints they receive. give feedback (both positive and negative) or comments, or raise concerns or complaints The Patients Rights (Scotland) Act 2011

8. Patients, people using services and carers can give honest feedback safely and easily Staff learn from knowing how their care is experienced Services can make small, steady improvements based on feedback Everyone can see how services are listening to users and changing in response Can we have a world where…

13. Over 2,600 stories shared Over 1.2 million reads! 500 + staff listening Over 100 changes made as a result of feedback Over 94% of stories have a response

16. The power of stories…

17. After recently complaining about the service I had received from the NHS … Psychology Department - see previous stories - I recently had the opportunity to meet with one of the PD's psychologists to discuss my issues with. Now as much as I will complain about bad service, I also give credit where credit is due, and I must say that I was pleasantly surprised and happy with how that meeting went… 1. The importance of good communication But what made the appointment a success in my view was that Dr … actually listened to me and gave me the chance to fully explain my issues, both my personal issues such as anxiety, gender and sexuality issues, as well as my previous negative experiences with her colleagues. I actually felt my opinion was being valued and taken seriously and that I was seen as a person, not a problem. https://www.patientopinion.org.uk/opinions/229431

18. Dear … Thank you once again for using Patient Opinion as a means of continuing to provide feedback about our service. I was delighted to hear that the meeting with Dr … went so well and that you left feeling listened to and valued. These are critical elements of therapeutic relationship and it sounds like this has been established and that there is now a good plan in place to provide you with ongoing support… I am delighted that Patient Opinion has provide you with a means to communicate with us. I have felt humbled by the honesty in your posts and am delighted that this engagement has led you to a better place. It demonstrates just how important it is to offer people a range of ways to communicate and shows that it can result in positive change. https://www.patientopinion.org.uk/opinions/229431 And a valued response

19. The … intensive home treatment team came to my home to assess me. I felt that they did not listen to me or respect my views and experiences. I also felt that they were patronising and made decisions without me and would not explain. I was not given any chance to be involved in decisions. There was no allowance for what I wanted or needed. I think I was treated without fairness or respect by several staff from the team. One doctor was argumentative and arrogant, talked a lot but did not listen to my views. I would not want them in my home again. https://www.patientopinion.org.uk/opinions/109382 2. The impact when not listening

20. It feels as though people in crisis are sent in a circle, bounced between teams and assessments and found ineligible, with no-one stopping to help. https://www.patientopinion.org.uk/opinions/10 9382

21. When I came to …. I was very ill but I did not realise it and thought I was ok. I was horrible, nasty and vile to start with, but the staff were so calm and amazing and really kind and understanding with me. They really understood me and helped me to learn how to calm down without harming myself further. I can honestly say I really had thought that no one could fix me or understand me, but you lot did ….despite me being hard at first. I can’t thank you all enough. I had given up on life, and because you never gave up on me, you gave me the chance to learn some trust and that means the world to me. …You have saved my life and helped me to recover… PS: Thanks you so much, you gave me my life back https://www.patientopinion.org.uk/opinions/229876 3. A chance to say ‘Thank you’

22. I called my crisis support line over a weekend, when I felt very distressed, anxious, upset and at risk of self harm. I have used this service a many times over the years, as a whole they have been very supportive, empathetic, given advice - where needed, supported me in the home - ( when referred ) and generally excellent. On this occasion I felt like Very un-supported, questioned as if they were reading from a manual, no understanding was given, the call was very abrupt. I did question it and was told the service had changed - which I felt its a shame that as a service user its a shame that were not informed? or asked our opinion? The lady I spoke to who did try to get me to use some of my distraction techniques - which really didn't work for me. Then in an angry tone repeated them back to me, and said this has not worked, this hasn't worked and so on.. She then said to me, we have been on the phone now 20 minutes all I can do is call you an ambulance, bye I have to go now. I do appreciate the cuts to the system and how hard staff work, but I was shocked and felt pretty awful after that call, and feel the need to flag it up for the benefit of others. https://www.patientopinion.org.uk/opinions/228310 4. Alerting others of poor service

23. My name is Victoria and I am the Patient Experience Manager for the Trust. Thank you for taking the time to post your feedback about our services although I am very sorry that you do not appear to have had a positive experience. I have fed back your experience to the managers of the Support Line and they have confirmed that service users were consulted about the Crisis Line, the predecessor of the Support Line, and this informed the development of the Line as it is now. However, your views are most welcome and if you would like to email me on complaintsmanager@swlstg-tr.nhs.uk I can facilitate a meeting or conversation between you with the managers, Sandie or Alan, to discuss this further. They will be taking your feedback to the team for reflection and development to improve the way calls are handled but if you were to email me dates and times when you called we can the track the call and feedback to the individual member of staff and part of their training. best wishes Victoria https://www.patientopinion.org.uk/opinions/228310 …which is used to improve services

24. Active citizens and their care Not collecting data, but connecting people Not making a comment, but making a difference Not choosing, but changing

25. Mike Hamilton Integration Development Officer Patient Opinion mike.hamilton@patientopinion.org.uk Twitter: @mikeedhamilton T: 0131 6187693