Our Patient’s Stories

From Frustrated Patient to Patient Partner

Jacinta shares her journey from frustrated patient to a Patient/Carer Partner with the Sussex MSK Service and talks about why it is important to work collaboratively with patients.

My battle with Lupus and Fibromyalgia dates back 14 years during which my Lupus symptoms were taken for granted. I had many different issues, such as pain in my upper stomach bloating, nausea, lack of appetite, weight loss, leg cramps, itchy skin with butterfly rash on my face, lack of sleep, upper and lower back-pain and extreme tiredness – all of which were ignored to a greater or lesser degree.

I now reflect on how frustrating I felt not to be listened to by the medical professionals when I reported my pains and wonder what would have happened to me if I hadn’t sought private medical help. I also wonder whether the gender health gap – the imbalance between the healthcare experiences of men and women – had a part to play in my late diagnosis as it took 4 years to obtain my Lupus diagnosis and 14 years for Fibromyalgia. I sometimes think/wonder if my age, gender and ethnicity might have had something to do with it.

It was with great relief that 2 years ago I came across the Sussex MSK Partnership through my Lupus support group. I found that they were addressing some of the frustrations I had felt as a patient, particularly with their Patient Carer Partner (PCP) programme, and were applying it to improve clinical practice – I found it totally inspiring.

Becoming a Patient Partner

I wanted to know more about the programme and met with its leader David Gilbert, to find out more. He explained that a PCP is a patient/carer affected by life changing illness, injury or disability who wishes to improve local health care by working collaboratively with service providers. He felt my experience and personal approach would be ideal. As a patient, I had learnt to be curious, ask questions to survive and navigate the system. I know this attitude helped make a big difference in the care that I received and believed that becoming a PCP would enable me to be a voice for other patients undergoing the similar issues.

I was intimidated at first – particularly by the clinical jargon – but the team was very supportive and I have become more confident with time. I was particularly impressed by:-

  • MSK’s focus on equal involvement of patients and carers as whole, particularly as regards to shared decision-making.
  • The emphasis on inclusion for all and their aim to forge a collective voice to influence change in healthcare for patients, staff and health professionals.

On a personal level I also felt that:-

  • MSK would help me with my own personal goals of making a difference, influencing decisions and making an impact on social-care issues.
  • My business skills, customer service background and interpreting experience would help in understanding the public’s demands for patient’s voice.

My Experience as a PCP

The main things I take from being a PCP is that both patients and clinicians benefit from having a more formalised patient voice. Dialogues are more equitable and both “sides” feel more valued and involved.

Patients and Clinicians

I worked on one particular project known as the Shared Decision Making Process in Crawley and Horsham and the use of the OPTION instrument as a means of assessing the extent to which patients are involved in their own consultations. I was pleased to note that the patients were fine with the PCPs being in the room with them but surprisingly, the clinicians found being interviewed to be quite nerve-wracking – in this case I was happy to find that the clinicians really did involve the patients. During the initial consultation for example, they actively listened to all their patients with good eye contact and enthusiasm. The clinicians also acknowledged the difficulty of their patient’s experiences quite early on asking the patients for example how their illness/pain was affecting their everyday life.

The patients themselves recognised that the clinicians were empathizing with their problems and that they were being listened to. They felt empowered as they were involved in all discussions of their needs and preferences. Patients were also happy to complete feedback forms to help MSK understand their perspective and also to provide patients with complaint procedures if not satisfied with the care. 

Generally speaking it is great to have clinicians value us as colleagues rather than patients and have a shared passion and reconnection to why we do the work that we do and values our feedback, openness and presentation.


Clearly there are many challenges facing MSK Partnership and their PCPs including Covid, funding  and advocacy for the patient’s voice across the NHS but from a personal perspective these are the most relevant to me:-

  • Communications – during the Covid 19 crisis- MSK has adopted digital solutions using Zoom and Microsoft Teams as a means of communications with the patients thus ensuring patients were still, seen and triaged where possible. Patients with complex conditions could also be seen by video consultations, and individuals without access to technology received telephone consultations without leaving their own home. Going forward I think digital technology will be crucial tool to help manage any increase in patients demand. 

There are of course still further challenges to be met including:-

  • The mechanics of how appointments work
    • Balancing patient’s frustrations with self –referral forms
    • The importance of providing clear contact details and what to do with missed phone calls
    • Providing detailed information on what happens next – eg opportunity to improve patients activation, monitoring and engagement
  • Inclusion and Diversity work. As a BAME PCP myself, it is great to see MSK doing their best to raise awareness on this issue especially at work place. They are trying to focus more on how BAME employees and patients are supported and included – of course there is still a great deal of work still to be done.
  • I have found NHS has its own culture, language/jargon and systems which are difficult for outsiders to penetrate thus making it difficult for patient leaders on all levels.

Apart from all of this, I’ve managed to gain experience and understanding in a number of differing areas including:-

  • National NHS social care context.
  • Leadership as a partnership.
  • Use of data-evidence to inform change.
  • Organisational concepts such as managing conflict-difficult conversations, change management, negotiation skills, giving and receiving feedback and coaching conversations.

Going Forward

As far as my own condition is concerned, I know that Lupus can happen to anyone no matter their gender, age or ethnicity. There are also many different illnesses with no direct symptoms and which differ from patient to patient, and can easily cause the practitioner to learn towards a more comfortable or better known ailment. Empathy with patients along with knowledge and understanding of conditions is vitally needed for a quick and accurate diagnosis that may prevent, for example in the case of lupus, the onset of major organ damage.

My own journey through frustration with doctors, eventual diagnosis and finally working with MSK as a PCP leads me to understand what a vital role the MSK Partnership has to play in raising awareness of MSK conditions and, more importantly, in the ongoing treatment and support of patients pre and post diagnosis.

I am proud to be part of the PCP programme which brings the patient into the treatment circle empowering them to take responsibility for their own treatment, in equal partnership with the clinician.

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