One of our readers shares her plea for greater understanding of the practical issues facing people with musculoskeletal disability
Dear Sir/Madam,
I felt that I needed to respond to the article in your May issue of Rheumatology Republic concerning the hidden burden of musculoskeletal diseases.
My husband is a general practitioner who has lived with severe rheumatoid arthritis for more than 40 years (almost 30 of those years as a highly regarded, registered, working GP) and it is through our experience that I feel that I have a firm basis to comment on this.
Obviously, we have experienced all facets of this auto immune disease from repeated surgical interventions, to an array of specialists in rheumatology, more than 50 hospitalisations, including many visits to emergency wards, facing periods of time with no income, managing increasing care needs and navigating support services, and most recently the NDIS.
Thanks to making the choice to study medicine, my husband Michael took himself from facing a life on the disability pension, to being “inside the tent” and being able to obtain the care he needed from medical professionals he respected. Not everyone has this good fortune.
A number of things stood out in the article by Penny Durham and the statistics highlight that there is a lack of focus on the people who are living with rheumatoid arthritis and musculoskeletal conditions.
The sad fact is that these conditions do not have a recovery end date, and this has an effect on the doctors treating these patients, as well as the families, carers and friends who by human nature grow a bit weary of the illness and possibly complacent.
People who have these diseases and face a life in pain, disability and often social isolation require specialists who really look at them as a whole person and who can give them hope and encouragement to keep going.
It is very much the case that you do feel like you are on your own and I feel for people who have lost their families and support networks over time. Friends and families often only have a certain amount of sympathy and care and cannot sustain the ongoing needs when someone is so ill all the time.
Rheumatologists have been asleep at the wheel as far as highlighting the needs of this group of people and the focus should never be just on drugs and research, but also on the here and now.
It is no use expecting politicians to have any idea of the needs of this group of people without a strong, media-savvy push unless the politician has a personal experience to draw on.
Rheumatology is not sexy, and it hasn’t had the successful campaigning as has cancer. To be a cancer survivor is revered and all levels of government, big business, private charity and support groups have rallied to the cause.
It shouldn’t be necessary, but it is. Considering the statistics mentioned in this article, it is time to start a meaningful campaign to focus on this group of people. Unlike many forms of cancer, which has a beginning and an end, people with rheumatoid arthritis need an advocate to speak for them and their carers.
People talk about “beating cancer “and there is a fairly well constructed path of treatment options that has greatly helped people to cope and survive.
What is the language for a disease you can’t beat?
As the article suggests, people with rheumatoid arthritis and musculoskeletal conditions are resilient and stoic battlers in spite of the reality that their pain often does not abate, mobility is impaired and the outlook is bleak as they age.
The prospect of requiring 24 hour a day care and the loss of independence and dignity is both frightening and places huge demands on carers and family members.
It has become apparent to us that Michael has been in a unique position to provide medical assistance to his patients as he has had a life time of being a patient. He knows the limitations of medication and surgery and how difficult it is to maintain a positive outlook.
It appals us both to find that the very doctors we turn to for assistance will drop the ball by having inaccessible surgeries, no nearby parking, inappropriate chairs, no disabled toilet, and at one surgery a treatment bed that did not lower.
To not have thought about how your patients will attend your surgery only reinforces the isolation of physical disability and makes us question the real motivation of these professionals.
It is easy for specialists to rely on general practitioners to fulfil most of the education and daily living advice to patients, but it should not distance specialists from doing some of the essential organisational support that relates to their patients.
While the majority of the doctors we have dealt with in the past 40 years have been kind, there have been a handful who have been cruel and useless. For the amount of effort and planning it takes to attend a specialist appointment, a person who has mobility issues really needs to get value out of it. Not to mention the stress for carers, who may have started the day with showering and dressing the person before they even begin the trip to the specialist.
So, the Federal Minister for Health Greg Hunt has pledged $4 million. This shows an ignorant lack of understanding and commitment to dealing with what is a national crisis. Perhaps he needs to be confronted with impairment to raise his awareness.
Any funding needs to begin to give people who are suffering in silence a voice. It needs to assist people who are struggling right now.
The number one issue is physical accessibility to buildings, navigable footpaths, lifts instead of 100 metre ramps, shade and rain cover over walk ways, doorways that accommodate wheel chairs and walkers, more disability toilets that are designed by people who have disabilities, more chairs that are at an appropriate height and design, no hinged and heavy doors, driveway assistance at service stations, more disability parking, to name a few.
The community needs to demand that businesses are named and shamed when they don’t comply to making their building accessible to all people. If your building only has steps, is over-filled with shop displays so there is no room to push a wheelchair or walk with a walker, you should lose money. If your holiday accommodation does not have a walk-in shower, or restaurant does not have a disability toilet, you should lose money.
Residential housing that does not address accessibility is also a concern that effectively excludes people such as my husband who cannot visit any relatives in Brisbane due to stairs, unsuitable bathrooms and the exorbitant cost to fit ramps and cover council fees.
Even the Endeavour Foundation, that espouses its work for the disabled, repeatedly misses the opportunity to showcase prize homes that are both attractive and have disabled access.
This relates to every aspect of daily life that fit and able person will be oblivious to until they or someone in their family is faced with physical impairment.
Accessibility has been talked about for long enough, but it doesn’t get enforced, so maybe it is time that there are effective regulations in place to make people accountable.
Rheumatologists may want research funds, but there are immediate barriers to access and the ability to engage in daily life which affect people with musculoskeletal disability where money would be better spent.
If money is to raised and awareness campaigns launched for arthritis, then architects, engineers, urban planners may have a greater impact than rheumatologists.
Kyleigh Simpson
Montville, Queensland
