Monday, 7 November 2011

If I could do anything as a health activist...

Money is no object - this is pure wishful thinking.

If I could do anything at all as a health activist, I would create a requirement (and the funding) for every hospital and large GP practice to employ a Chronic Illness Advocate. This person, and I would love this job, by the way, would work with patients who have chronic illnesses or disabilities to ensure continuity of care.

Patients with chronic illnesses often see numerous specialists at lots of different hospitals. In many cases, they are the only person who is able to see the 'big picture'. When something goes acutely wrong and they are admitted to hospital, doctors often focus only on the acute presenting symptom. They may not remember to prescribe asthma medications to the patient admitted with abdominal pain, or anti-nausea meds for the patient admitted with asthma. They may fail to consider the fact that the patient isn't eating or drinking adequately, that they get dizzy when they stand, or that they are a 'hard stick' when it comes to IV access. They may also fail to consider how the current problem may impact on their patient's existing medical conditions. 

The imaginary (but wonderful) Chronic Illness Advocate would help the patient to coordinate all aspects of their care, across numerous medical and surgical specialties, and between different hospitals and clinics. They would take time to talk to the patient about all their symptoms (not just the edited list that can be given to the doctor in 10 seconds), help them to keep good records of their medications, allergies and other important information, and consider longer-term and proactive interventions. Among other things, they would consider:

- Nutrition:
Is there a need for weight loss or gain?
Are there any nutritional deficiencies that need to be corrected?
Is there a possibility of food intolerance/allergies contributing to symptoms?
Is the patient able to shop, prepare, cook and eat adequately, or do they need help with this?

- IV Access:
Does the patient have difficult veins? If they are likely to need significant periods of IV access over 6-12 months, or if emergency IV access is a priority, consider longer term IV lines (e.g. midline catheter to be placed on admission, PICC for 6-12 months, port-a-cath for long-term but intermittent use, Hickman or Groshong catheter for long-term continuous use).

- Complicated Medical Conditions:
Can the patient be 'flagged' to local ambulance services and emergency departments?
Could the specialist(s) prepare a protocol to be used for anaesthesia or in an emergency?

- Social and Psychological
Is the patient receiving all the help he/she needs (including state benefits)?
Would the patient benefit from (or like) counselling?
Would the patient benefit from physio/OT or social services assessment prior to discharge?

I could go on and on. Doctors and nurses in acute medical units are often too rushed to take in the whole history if it's complex, and are often so focused on the current problem that they don't deal with 'non urgent' abnormalities in blood results, or follow up on 'irrelevant' symptoms. As a result of this, patients often end up advocating for themselves - researching intensively into their own conditions and symptoms, checking their own blood results against normal values, checking their medications for side-effects and interactions. Most of us were not trained to do this, and even if we were, isn't it difficult enough when you're not feeling well, without having to be nurse, doctor, psychologist, lawyer, accountant and everything else at the same time?

The Chronic Illness Advocates would be based in a Complex Care unit. This unit would be staffed by doctors and nurses, physiotherapists, dietitians, occupational therapists, pain specialists, psychologists and social workers. Oh, and Adult-Life Specialists for distraction, play therapy, guided imagery, adult education classes, arts/crafts/gardening/other skills, and preparation for procedures. This unit would see complex patients as outpatients, along with visiting specialists, would house medical records and protocols for their patients, and would admit complex patients to their unit for multidisciplinary care. There would be pleasant places to sit, to eat (or just get a coffee); the walls would act as a gallery for local artists and photographers to display their work; there would be relaxation classes and yoga in the physio gym out of hours, internet access and a library, and various interest groups for patients.

Not only would this unit provide top-level care for patients with complex medical conditions, but they would also act as an informal meeting point and support network for patients, who often don't meet others 'like them'.

While it's generally recommended that multidisciplinary care is the gold standard for many chronic conditions, this doesn't often happen. In the meantime, I continue to be my own Chronic Illness Advocate, keeping extensive records and protocols that I can take to hospital appointments and admissions, keeping track of my own blood results and finding out as much as possible about ways in which I can improve my health and quality of life, both medical and non-medical. I try to support others with chronic illnesses, both online and offline, with friendship and information.

But I can still wish for the day when everything I've described above could be reality...


  1. What a GREAT Idea! I want you for my advocate!!

  2. I'd love that! I try to do it for myself, but sometimes I wish that someone else would help me so that I can focus on being the patient and looking after myself as well as possible!

  3. Can you imagine if this not only existed but was covered by insurance?!?! Sigh...

    On a side note, I would LOVE to do this as well. Only I dream of doing it for children, to help take some of the burden off the parents and let them focus on just doing the mom and dad stuff.


  4. That's exactly what I would hope the job would achieve - it would give people space and time to be themselves (parents, husband/wife/partner, friend, etc). Chronic illness often steals that, and everything revolves around the illness, which definitely shouldn't be the case!

    I think you'd be fabulous at this job! If I ever find a way to make this real (online health advocacy, anyone?!) you'll be right at the top of my list!

    Big hugs, Jo