All I want for Christmas is…The BMJ’s patient advisory panel tell us what is on their Christmas wishlist

Dear Father Christmas,

I do apologise for bothering you. I know December is fiendishly busy, and how you manage to conjure such good cheer in it, year in, year out, century by century, has long baffled me. Are you impervious to burnout? And how are you keeping abreast of children’s wish lists these days? With written letters dying a death you must be being bombarded by e-mails and social media. Just as well you have those young elves to lend a hand. Under the circumstances, it’s audacious to send on a grown-up’s wish list, but I’ve had my arm twisted to do so by members of the BMJ’s patient advisory panel. For some unfathomable reason they think you might find time to read it; and that your goodwill and unbelievable skills may hold the key to realising their wishes. So here goes….

Can you deliver access and ownership of our own health data and push technological frontiers?

“I want to own my data not the institution” (Mike Gill)

“Gimme my damn data—please” (Dave de Bronkart. A view echoed by all panel members by the way

All I want for Christmas is whole genome sequencing for every patient that was ever told their symptoms are all in their head, down to stress, or in the case of their children that they are attention seeking, over-anxious, or worse might have Munchausen’s syndrome. As the costs come down and our rate of discovery goes up, I suspect the medical profession will owe a lot of people apologies.” (Paul Wicks)

Any chance of accelerating the move towards partnership in healthcare?

“I wish for a sustainable shift from a provider driven system to a patient driven and less hospital-centric system; with more patients in leading positions in health research and education and clinical settings too. Fully recognized in their role because of the added-value of their knowledge. Policy makers should mobilize patient partnership as an essential strategic driver to system transformation.” (Vincent Dumez)

My wish is for health systems to be fully accountable to patients and their clinicians and that on every governing board patients and clinicians have an equal voice (Amy Price)

Please spread the word that patients can help address healthcare’s problems

“My Christmas wish is for patients and healthcare professionals alike to stop seeing patients as always helpless and without knowledge and start acknowledging patients’ competences.” (Sara Riggare)

I’m wishing for health services where patients and staff are treated with respect, and equals who both bring significant knowledge and expertise about what’s helpful and what isn’t.” (James Munro)

Might you find a way to make services truly person centred?

“I wish for healthcare systems to be built for patients, rather than for everyone else (that includes politicians, who want to be re-elected.) For more virtual care/visits where and when this makes sense; more ‘powers’ to nurses/nurse practitioners, pharmacists. And more efficient systems that don’t require patients to make sure referral appointments get scheduled etc” (Dawn Richards)

“My utopian request would be for continuity of care but I know that even you can’t deliver on that Santa, so here is an easier ask. Can you ensure that when a doctor orders a test or investigation they always tell the patient (a) when the result will be available (b) how it will be delivered  (c) and give them options e.g. e-mail, letter, text message etc” (Tessa Richards)

“It’s being advised already so can you make sure all letters about me are sent to me, the actual patient. And if there is room for a stocking filler…never to be described as ‘a charming man’ i.e. can’t quite remember who you are #pickapatient  (Mark Taylor)

I’d absolutely love it if the Belgian Santa would make our system fully electronic, so that we wouldn’t need to submit a separate reimbursement paper for each and every time we visit a doctor’s surgery…  I’d love to just swipe a card at the doctor’s and have the money appear in my account a bit later. And for good measure automate both “basic” and “complementary” insurance and align the two systems! #utopia…(Kaisa Immonen)

Better pathways for patients and carers is on my list. I have been on an odyssey this year with my mum—each time it was not clear why she was put on a pathway (letters and phone calls out of the blue), there was no two way communication or consultation, and each time it resulted in nothing that added to her quality of life (and I suspect cost the NHS loads of money). She has a Do Not Resucitate order and an Advanced Care Plan and I have health power of attorney, so heroics are not part of her journey now, but these difficult family decisions seem to account for little. (Sally Crowe)

“My wish is for better understanding of patients “fear, loneliness and despair.” (Manvir Jesudasan)

“I wish for people to be listened to, and their concerns taken seriously, and acted on where necessary. Feedback to be received non-defensively by staff open to learning and improvement in response to what people are telling them about their care. Health services where mistakes are acknowledged, people take responsibility and apologise when needed and where understanding and valuing people’s experiences of care is recognised as essential to safe and effective services. (James Munro)

My first wish is that the healthcare systems take a holistic approach to patients—not see them as a collection of body parts, but as whole people to be helped to live the best life they can. My second,  that those providing health and care see patients as people deserving of respect and humanity (I’ve been overwhelmed of late by stories of patients being treated with nothing short of contempt). (Ceinwen Giles)

You get the relationship between physical and mental health Santa, so can you kindly ensure others get it too?

“Many problems straddle both sides of the divide: Pain, fatigue, anxiety, memory loss—and the barrier harms people, both those living with severe and enduring mental ill health, who have shockingly low life expectancy, and people living with physical health problems who don’t get much help with their emotional and mental health needs.” (Charlotte Augst)

We know you can stretch time but might you stoop to dabble in politics and commerce as well?

“Please abolish capitalism where shareholder value (i.e. more profit) comes before human lives.” (Tamas Bereczky)

“Please ensure health systems are fully accountable to patients and their clinicians and for the cost of drugs and interventions to be based on true manufacturing and development costs—and find time for doctors to practise medicine for the whole person with the person” (Amy Price) 

Well, what can I say in the face of such extensive wishes? And in one case a bit of special pleading from a new panel member

“Santa I feel I have been a reasonably good girl. What do you reckon my chances are of my wish coming true ?  

Good luck in the countdown to Christmas Santa. Meanwhile, let’s all dream on.

With love, thanks, and boundless admiration

Tessa 

PS.  I’m pleased to say, one panel member put family first and asked  for an electronic kite for his godson. Any chance of delivering on that?. 

PPS. Panel members are keen to know what other patients are wishing for—and what’s on health professionals wish lists too. We are in this together after all. Share your wishes using the hashtag #BMJXmasWishlist #XmasBMJ

Tessa Richards, The BMJ. You can follow her on Twitter @tessajlrichards

Competing interests: None declared.