Open letter to GPs from a person with cerebral palsy

I AM a trained school teacher and a social worker. I have a full-time job that I enjoy, and I live with a diagnosis of cerebral palsy. I use a range of mobility aids including a powered wheelchair. My aim is to be healthy and participate in life to the full.

It is important that I have a good GP. Over the years, I have found that there is no “one size fits all” when it comes to providing health care for people living with cerebral palsy.

Due to the lifelong nature of the condition and the impact it can have on the body with ageing, people need to spend time choosing and then maintaining an open and honest professional relationship with their GP. So, what are, for me, the most important requirements for the GP in this situation?

I want to feel liked and valued as a person

I know time is money, but I am not my diagnosis. I would like to establish a professional working relationship with a GP who shows interest in me as a person and takes time to get to know me as an individual. I need to feel comfortable with my GP and trust and respect their judgement.

I would like access to personable professional GPs

I would like a GP who has great questioning skills and listens to me without making any judgement. That GP makes me feel comfortable, explains things clearly but doesn’t speak down to me. That GP is honest about what they can and can’t do for me and why, and is explicit in explaining what I need to do with regard to my treatment. That GP follows through and does what they say they are going to do in a timely manner. They don’t fob off my concerns. They are confident in their abilities but don’t pretend to know something when they don’t. That GP can refer me to another professional or specialist when required. They value my lived experience of my disability but don’t expect me to have all the answers either. That GP doesn’t put everything or a lot of things that I have issues with down to the fact I have cerebral palsy.

I would like affordable, accessible GP care

To me, this means a GP I can make an appointment to see when I need to.

I would also appreciate a GP who bulk bills, especially when it is a repeat prescription, a simple referral or paperwork.

Tasmania has very low rates of bulk billing doctors, even for those receiving a Disability Support Pension or who have a health care card. As an individual living with cerebral palsy, I frequently need to go to the GP to get referrals and have paperwork completed to enable me to access activities in the community and to stay as healthy as possible.

I would value a focus on primary or preventive health care

I value my health and work very hard to maintain it. I appreciate a GP who sees me as the expert in my own life, provides a holistic service and works with me to manage my health.

This means a GP who is open-minded about other possible treatments, especially in relation to chronic issues, and who addresses diet, sleep, exercise, relationships and social connectedness as important to health.

I would have liked my GP to know that:

• I felt embarrassed about being a “frequent flyer” to your service when compared with my able-bodied peers.
• I disliked having to come to you to fill out endless forms. I know you didn’t become a GP for this purpose. Unfortunately, I needed you to fill these forms out and write letters on my behalf and I thank you for that.
• Although I have known that I have cerebral palsy for a long time, I most certainly didn’t consider myself disabled. I didn’t know it wasn’t normal to feel tired and exhausted at the end of the day. I had no idea that I would experience the effects of ageing in my early 20s. I would have appreciated several discussions as I dealt with my grief surrounding my decreasing mobility and increasing fatigue.
• Once I aged out of paediatric services, you were my only link to the health care system. You either didn’t know yourself or assumed I knew where to get access to ongoing support.

I don’t want this article to be about doctor-bashing. I know how hard GPs work and the challenges they have providing the best care possible to their patients. I have had GPs and other doctors who had done many things brilliantly, and apart from showing them appreciation, I want the others – the ones who could do better – to know where they can improve.

I have appreciated when:

• My GP has taken the time to get to know me as a person in the context of my physical and social environment, taking an interest in me as a person. Questions about how my work or study is going and how I am sleeping have made it easier for me to get access to good health care. Another example is being able to have a phone consultation to get a repeat prescription when I have been recovering from surgery.
• My GP has asked good questions in order to understand my presenting issue and has asked, for example, how an ear infection may make me more unstable on my feet or make me more fatigued than an individual without cerebral palsy.
• My GP has taken the time to discuss with me my concerns about long term use of a particular medication.
• My GP has valued my “lived experience of my disability”.
• My GP has apologised for running late or thanked me for waiting if they needed to take a phone call or see an urgent patient.
• My GP has provided information about the condition I have and then enabled me to make an informed decision about what steps or treatment options I have. This has at times included a discussion about alternative therapies in addition to traditional treatments.
• My GP has explained why they have recorded information the way they have and why they need to ask certain questions.
• My GP has been an advocate to get much needed services.
• My GP has filled out paperwork and has taken the time to explain why things have been written in particular ways. At times, my GP has laughed with me at some of the “red tape” they have had to be overcome by filling in paperwork.
• My GP has been honest with me about what they can and can’t do in their role and has expressed frustration about the lack of services and specialists who treat adults with cerebral palsy.
• My doctor has been available for an urgent consultation.
• I have received a courtesy call or text from the receptionist if the doctor is running more than half an hour behind schedule.
• I have personally received or have witnessed a welcoming greeting from the reception staff on arrival. I have also appreciated staff offering to hold open the door when I am coming or going. Access to a service is more than an automatic door and a level environment – attitude is more important.
• Staff have provided excellent customer service. Examples include faxing a referral on my behalf and ringing a specialist to make an appointment, letting me know when my GP is going to be away in case I need to make another appointment. Other examples include allowing me to see my GP in a room close to the reception to limit unnecessary walking, or explaining where the closest after-hours pharmacy is located.
• My GP has trusted me and provided their immediate contact details to be passed on to my treating doctors should they have any questions when I have flown interstate for surgery.

Thank you to those doctors who know instinctively how to be the GP I need. And thank you, too, to the ones who are willing to learn.

Natasha Street has lived with cerebral palsy since birth. She has a Bachelor of Education in Early Childhood Education and a Bachelor of Social Work and has previously worked as a primary school teacher in the north of Tasmania. Natasha was involved in the National Disability Insurance Scheme Workforce-ready Reference Committee as the only independent Tasmanian member, and she was a consumer representative for the Tasmanian Health Plan. She is passionate about her volunteer work and involvement on various committees aiming to highlight community understanding of the needs of people living with physical disabilities.

Further information on improving the health care of people with cerebral palsy through support and resources for GPs – a series of educational fact sheets is now available.

The statements or opinions expressed in this article reflect the views of the authors and do not represent the official policy of the AMA, the MJA or MJA InSight unless that is so stated.

To find a doctor, or a job, to use GP Desktop and Doctors Health, book and track your CPD, and buy textbooks and guidelines, visit doctorportal.