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What’s stopping you appointing a Patient Director? An open letter to all healthcare organisations

David Gilbert is a former mental health service user and has 25 years’ experience of working in patient and public engagement at local, national and international level. He was co-founder and a director of the Centre for Patient Leadership and the NHS Centre for Involvement. He is currently Patient Director at Sussex MSK Partnership. Here is an open letter David has written to Trusts in England, to encourage them to think about appointing a Patient Director to their management teams.

“Dear Chief Executive,

As you are well aware, in all parts of the country, the patient movement is growing. There are patient entrepreneurs inventing apps and social entrepreneurs, community development activists, people with ‘lived experience’ gathering in pathway redesign meetings.

They are moving beyond just ‘telling their stories’, They’re staying in the room to reframe problems and come up with new insights and angles; using the wisdom they have gained through suffering, wanting not to shout or merely have a ‘voice’ any more, but to be true partners.

You’ve begun to realise, perhaps, that the old way of doing engagement does not work – feedback mechanisms that don’t focus on what matters, or fail to have impact, and focus group reports that sit on the shelf.

And yet at the same time, you are distrustful that any one patient can represent others. You want to engage people, but you don’t know how.

So take a look at what we’ve done in Sussex MSK Partnership When the Clinical Commissioning Groups (CCGs) put out a contract for a partnership to oversee the entire musculoskeletal pathway and to make sure patients are in control through an emphasis on supported self-management and shared decision making, they went the step further – they appointed a Patient Director at executive level, alongside Clinical and Operational Directors.

The Patient Director ‘represents’ nobody, not even themselves. They are there to ensure that there is a culture and systems that embed ‘patient partnerships’ in everyday business. We are there to broker opportunities for patients at all levels – at corporate and pathway governance level, in improvement work, in training, in induction, in values and vision work.

We are still learning and evolving. But the early signs are good. On each of our three Commissioning for Quality and Innovation (CQUIN) projects for 2016/17, patient partners contributed to design and delivery of work on pain services redesign, shared decision making and patient-centred outcomes.

We have eight supported, trained and valued partners who will decide how to move forward and how to bring along others.

These patient partners are not ‘reps’ and they do not displace other engagement or patient experience work, but they are supposed to be in the room when decisions are made. The aim is to share power.

I do not believe we would be where we are in just two years of a new partnership, trying to transform and deliver services for a catchment population of 750,000, if there was not a Patient Director.

It is also the right thing to do, ethically, morally, philosophically, politically, personally, professionally. After all, if you were a man leading an organisation made up entirely of men that was devoted to women’s rights, you wouldn’t just set up a couple of focus groups.

You wouldn’t get a woman’s involvement lead, have a women’s sub-committee and have emotional ‘women’s stories’ at the beginning of Board meetings and think that was really ‘putting women at the centre’.

It all adds up: need for new engagement approaches + valuing patients for what they bring + creating opportunities + supporting people + patient director = a better way of doing things that can help heal the healthcare system.

So, what’s stopping you?”


Click on this link to read more from David Gilbert


Do you think having a Patient Director in organisations could work in Northern Ireland?


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Previous comments ...

Phyllis Mc Goldrick 07-Dec-2017 at 16:50 hrs

I congratulate you David Gilbert.You are a very knowledgeable and articulate gentleman for your 23 years.My Christmas list for Santa will include a wish that funding be provided by each Trust in Northern Ireland in order to appoint Patient Directors without delay.


moira reardon 26-Nov-2017 at 14:07 hrs

What would the role of Patient Director be? would this just be another administrator job? I think it is clear what people with mental health problems need.
1. a safe place to live with on site support if needed.

2. that they have easy access to medication and hospital care.

3. that education and employment is encouraged and supported

4. that family members are supported in the care of members of their family.
5. that the community in general are made aware of the need to care for people with mental health problems.

Do we need a patient director for the above? who is currently responsible for these services?


Dr Mary Gethins 25-Nov-2017 at 10:54 hrs

I salute David Gilbert for the wisdom of the powerful, carefully argued case which he convincingly makes in support of appointing Patient Directors. Let's start implementing this common sense innovation in Northern Ireland forthwith!


Linda Browne 25-Nov-2017 at 10:34 hrs

We need anything that will help put the patients at the centre of their care and not as an after thought.
I work as a health care professional and i am a patient on an endless list, so seeing so many reasonably well paid people standing around doing nothing or doing paperwork that could be done by those who are not directly involved in patient care makes me mad. Someone needs to reorganise the services we provide.


ISOBEL MCCAUGHAN 25-Nov-2017 at 05:10 hrs

more money going out to yet another person who will be paid far to much. its peopleat the top who should be scaled down to have more money for pt care. Our nurses are over worked, stressed out, and burnt out. Hospital beds have been closed and due to imigration recently , total no of pts have increased - thus waiting lists have climbed.


Deborah Kenny 24-Nov-2017 at 23:39 hrs

It would be sensible to listen to experts and this gentleman is no doubt an expert.


eve.booker 24-Nov-2017 at 22:46 hrs

Reading this item I immediately thought "Hooray" somebody has got through to the NHS that patients are important in the NHS---without patients it would not be still here.Whilst all the professionals are the main people with the knowledge, the public also have a great knowledge --of how they are affected,how the system could work better for them and the system as a whole.I'm afraid that management tend to ignore staff's opinions and definitely the public's views.In England they have Foundation Trusts and members of staff and public are elected by their peers to go onto the management board and make the views known to the CEO's,Chairs and NED's,Nursing directors and the finance director.The governors have the power to make the board go back to the drawing board and look again at issues--the govs are well aware of the needs to keep the hospital debt free,and maintained ,ensure that the CQC conditions are adhered to --and they also sit on sub boards dealing with every dept---every gov has a special responsibility for a area,dept etc and the right to go onto the wards to speak to staff if they have a query. The powers that be over here could do well to take a close look at how the system over here could be improved by having patients working closely with the boards.The public know who their reps are and how to contact them, they also know the reps(govs) will take the query to the right people and get an answer for them/how to go about an issue re the NHS.I know it works---I was an elected public governor in England!


Brendan Clarke 24-Nov-2017 at 22:03 hrs

There is plenty of listening to Patient Views in Northern Ireland but only on agendas prepared by NHS professionals and tightly adhered to by those professionals. Minutes of meetings are written by those same professionals with no hard copy provided to attendees of the meeting prior to being passed up the management structure. Too often people running the meetings seem more interested in enhancing their own career prospects rather than embracing concerns. Agendas should be set by patients and minutes written by patients and those minutes should be published on this web-site by Patient Client Council without any alteration. There are still too many closed doors and personal power agendas in the Northern Ireland NHS which are designed to reduce the impact of patient input. Disability Discrimination is rampant in the NHS but is never discussed as evidenced by the lack of video screens for calling patients in A&E, Out-patients and other clinics including ENT where one would think it an absolute necessity. It is not possible to raise the issue because attempts to raise the point are excluded by a pre-designed agenda which does not include disability discrimination. Cost is never mentioned as a reason for not including in future agendas. Patient Input must reflect Dept of Health mythology to be considered worthwhile and suitable for discussion. At present Patient input is controlled and not welcome if it does not meet Dept of Health approval. Patients need to control the agenda and the minutes.


Charlie Lynn 24-Nov-2017 at 20:00 hrs

Hello, I just want to say I have read the open letter and all thou I don't fully understand it I would like to say that I suffer from severe depression and severe pain everyday I just don't complain anymore as I think to be really honest the NHS is now on it's last legs. The right wing government that we have now is rapidly Americanising the health service and soon it will only be the rich that will be able to get treatment. Already the only way people can get treatment is to go private hence NHS is now for the rich. very depressing I know but the truth often is.
Charlie Lynn.