Category: Blog

My Health Record Webinar 1 – Privacy and Security – Key Takeaways

Posted on August 23, 2018

Consumers Health Forum has been funded by the Australian Digital Health Agency to run a series of free webinars on My Health Record. You can register for them here.

The webinars are just under and hour, and are available on replay on the link above. As everyone is so busy, I have watched this and include key takeaway messages which I have summarised from comments made.

There are three options for consumers – opt in, opt out or opt in but include protections on data you don’t want to be publicly available. (Karen Carey)
You have to make the assumption that the data you have in My Health Record may at some time be inadvertently made public and identify your own risk level and mitigate that risk by using security controls. It is not helpful to try and assuage consumer concern by talking about how high-grade the security is and that a breach will never occur. The chances are it will, so consumers need to proceed on that basis. (Karen Carey)
Risk mitigation means considering your own personal circumstances and make sure that any relevant information is not included (Karen Carey)
My Health Record is just a summary of the rich data that at GP or specialist may have about you – a summary page, not the whole thing (Charlotte Hespe)
You can work with your GP on the summary – (Charlotte Hespe)
The protections on our data and privacy over the last thirty years have been eroded, drip by drip. Policy and legislation can be altered and so we do need to be mindful of this when given assurances that our data won’t be shared with other agencies. (see point 2) (Bruce Arnold)
These are important conversations about My Health Record but a) they should have taken place some time ago and b) they need to be with a much broader audience (Karen Carey and Bruce Arnold, various comments)

I have had a My Health Record for three years now, and when I applied you needed to have all your key documents with you and it was a cumbersome process. There was not much data on it but it is increasing. I personally feel like Facebook knows more about me that the Australian Government ever will. My Health Record is a necessary step towards simplifying our complex health system and literally saving people’s lives by the access to key information about allergies and medications. However, as it was mentioned several times in the webcast, people’s care will be impacted by certain things – mental health diagnosis, drug and alcohol history and on and on – for myself personally this is not an issue and it is important to consider your own circumstances. If in doubt, opt out.

How easy the privacy controls will be for someone with no or low literacy or minimal computer access is not really considered, as in so much of how our systems work.

Panellists:

Kim Webber – General Manager, Strategy at the Australian Digital Health Agency
Karen Carey – Consumer Advocate, former chair of CHF and Chair of the NHMRC Community and Consumer Advisory Group
Dr Bruce Baer Arnold – Assistant Professor, Law at University of Canberra and Vice-chair of the Australian Privacy Foundation Board
Dr Charlotte Hespe – GP, Glebe Family Medical Centre and RACGP Vice President

Pip Brennan, Executive Director, Health Consumers’ Council

Senate Inquiry into Pelvic Mesh – A Scandal of International Proportions

Posted on May 14, 2018

On Wednesday 28th March, one day late, the Senate Inquiry into the “Number of women in Australia who have had transvaginal mesh implants and related matters” handed down is final report. The Senate Inquiry was championed by Derryn Hinch, who called pelvic mesh “the biggest medical scandal for Australian women since thalidomide in the 1950s and 1960s, when kids were born without arms and legs”.

Derryn Hinch had listened to the voices of the Australian Pelvic Mesh Support Group women who campaigned tirelessly to be heard. He was able to get the Senate Inquiry convened, and the hope was that the Senate Inquiry would raise awareness of the permanent, life-altering consequences for some women and call for a ban on its use. However, instead of a ban on the use of mesh, the Inquiry has recommended that mesh only be used “as a last resort”. This Media Release from the Australian Pelvic Mesh Support Group outlines the view of the women across Australia who have suffered permanent, life-altering consequences of pelvic mesh to the Inquiry Report:

There are a few glimmers of hope for mesh-injured women in the report – but the wording used in the recommendations are so weak that it could, if not followed up by robust policy change, give Australian health authorities, specialists and primary carers permission to carry on as usual.

This article summarises the Inquiry Report and highlights the critical importance of always asking the questions you need to provide informed consent. It is simplistic to say that your doctor only has your best interests at heart. There are many other factors at play, as this pelvic mesh scandal has shown.

Complications

Chapter Two of the Inquiry’s Report is a must-read. It documents women’s experiences of complications from mesh implants, compounded by an inability or unwillingness of the medical profession to hear and respond to these reports. At great personal cost, women attended the Senate Inquiry hearings to tell their story:

I presented with mild stress incontinence with exercising and 2 years on I have total and uncontrollable urinary incontinence. I have had multiple hospital admissions, surgeries, invasive investigations and a total loss of my pride as a woman. Name withheld, Submission 458, p. [6].

I dragged myself to work each day and on weekends I was bedridden. I was unable to do normal things like shopping, cooking and housework without debilitating pain and fatigue. My relationship with my family, friends suffered as I could not handle social activities. Not being able to care for my new grandson broke my heart. Surfing was impossible and walking the dogs or doing other light physical exercise was just too painful. Name withheld, Submission 67, p. 1.

To this day, women will still be told “it’s not the mesh” by their GPs and specialists. Even by clinicians working in Mesh Clinics.

Consent

Does it seem peculiar that a Senate Inquiry would spell out the process for ensuring that patients provide informed consent to having a procedure? And yet that is exactly what Recommendation 6 addresses:

The committee recommends that the Australian Commission on Safety and Quality in Health Care prepare guidance material on effective informed consent processes, with a view to ensuring that a dialogue between a medical practitioner and patient should:

clarify the rationale for the proposed treatment;
discuss the range of alternate treatment options available and their attendant risks and benefits;
discuss the likely success and potential complications of the recommended treatment as they relate to the individual patient;
provide an opportunity for the patient to ask questions; and
confirm that the individual patient has understood the information discussed.

Here is one consent conversation, which was echoed in many of the submissions and evidence given to the Senate Inquiry:

I was told by my implanting surgeon that I would be back at the gym within 10 days post implant procedure and that I would be like a 16-year-old virgin after the implants. Committee Hansard, 18 September 2017, p. 1.

And many other women simply do not know they have been implanted with mesh. Here is another, common reflection from a woman in a submission to the Inquiry:

How can I have not known a foreign medical device had been implanted in my body without my consent? Name withheld, Submission 528, p. [1]

Reporting complications

There are key barriers to the reporting of complications:

1) it is not mandatory for clinicians to report complications:

…based on my experience and that of many other women in this town, I would not trust surgeons to report complications or gather accurate research data. We all have similar stories of complications, including crippling pain and terrible bowel and bladder symptoms, which were trivialised or denied, and we were told we were the only one with an adverse outcome, that it was our fault that our body had reacted to the mesh. We were abandoned by our surgeon and left to cope as best we could. Kathryn, Committee Hansard, 19 September 2017, p. 4.

2) women are simply not believed when they report complications:

The problem is acknowledging the symptoms in the first place, though. There are a lot of GPs who won’t acknowledge it and there are a lot of gynaecologists who won’t acknowledge it… How can they report it if they’re not acknowledging that your pain and complications are from your mesh? Carolyn Chisholm, Committee Hansard, 25 August 2017, p. 9.

3) it is a complex non-consumer friendly process, requiring the serial number of the mesh implant, which most women won’t have without getting their medical records, which may no longer be available:

Although I am interested in reporting the adverse events I have experienced to the TGA, the TGA Users Medical Device Incident Report is daunting and I simply do not have the detailed information they request for device identification… I have encountered obstacles in trying to obtain my medical records. Name withheld, Submission 477, p. 3.

Medical Device Companies – driving uptake

Prior to my involvement in this issue, I had no idea that medical device companies are the bodies that train clinicians in how to use them. Effectively, they can drive demand for their own product:

The sponsoring companies actively promote medical specialists who utilise their products to referring GPs and company-sponsored educational activities, where one of the aims of that activity is to increase utilisation of those products. Sponsoring companies are also actively involved in the education and provision of training to
medical specialists. Associate Professor Christopher Maher, Committee Hansard, 19 September 2017, p. 30.

What about women who have been injured by mesh?

Every aspect of women’s lives are impacted when there are severe complications. Inability to work means significant economic disadvantage. Sexual dysfunction can mean the end of a relationship. Pain robs life of its quality. Accessing medical assistance is hugely problematic when there is a lack of acceptance that the symptoms are related to mesh, and the lack of actual services. Mesh removal services are very patchy, and some women were advised that mesh removal would mean a colostomy for life. Women have voted with their feet and travelled to the US to access specialist mesh removal care which has not resulted in this awful choice between removal and a functioning bowel. The surgery is significant and the outcomes are uncertain. There is no guarantee the debilitating pain will cease once the mesh is removed.

The final Recommendation tries to address the range of impacts on women:

Recommendation 13: The committee recommends that State and Territory governments continue to work with the Australian Commission on Safety and Quality in Health Care to review the provision of services for the use and removal of transvaginal mesh devices. In particular, the committee recommends that consideration be given to the establishment of:

information and helplines that women who have received transvaginal mesh implants can contact for advice on the availability of treatment and support services, including financial support programs, in their state;
specialist counselling programs, to assist women who have sustained injuries following transvaginal mesh procedures;
specialist multidisciplinary units for the assessment and management of complications associated with transvaginal mesh procedures, comprising:
- comprehensive diagnostic procedures, including relevant diagnostic imaging facilities and expertise;
- specialist pain management expertise; and
- high level expertise in the partial or full removal of transvaginal mesh;
advice and practical assistance for women who are seeking to access their medical records

The Health Consumers’ Council of WA is aware that many women impacted by mesh implants are seeking full removals, not partial removals. The reality is at present that there are few surgeons, if any, who can perform full removals in Australia. Women have completely lost trust in the clinicians who implanted them in the first place now assuring them that the mesh will be fully removed. Since the Inquiry has finished, we are aware of women who have sought imaging after enduring full removal procedures only to discover there is still mesh inside them.

Western Australia

Women in Western Australia are referred to this page on the Health Consumers Council website for up to date information. This is an area which is rapidly changing. Please contact HCC on 9221 3422 during office hours if further support is required.

Written by Pip Brennan, Executive Director of the Health Consumers’ Council (WA) Inc.

Perth Children’s Hospital Parking

Posted on December 27, 2017

The planned new subsidy scheme for Perth Children’s Hospital is the subject of this ABC news article which reveals that there will no longer be free parking for any families, and that the new rebate scheme, which may support more families, will cost $5 per day. Those who are not eligible for the rebate will pay $21.30 per day

We asked you to complete a survey about parking, and more than a 100 of you responded. The first question we asked is “What do you think?” and received an overwhelming response that this was not OK. The full ten pages of comments are here. This is what you said, in a nutshell:

Parents of sick children are already under stress. They shouldn’t have to worry about parking too
Parking shouldn’t have been privatised in the first place
There should be a CAT bus which goes past the Perth Children’s Hospital

We also asked you what you thought could be done, and received seven pages of comments you can read here.

And we were reminded that NSW drastically cut the cost of hospital parking after a petition was started by a young patient, and so did Queensland and it was only just over a year ago that WA’s Nathan Garcia protested his mother Monique Garcia’s parking fine of $1,000 which prompted a national petition, now closed, for free hospital parking. It is a big nut to crack, hospital parking, as there are complications such as free parking being mis-used by people not attending the hospital (which obviously can be overcome by ticketing technology), and considerations of how the cost of maintaining the car park will be met (e.g. in loss of clinical services) and so on. But it is a conversation we need to keep having.

Next steps

We will contact those of you who said you would like to keep in touch with us about this issue.
The CAT bus is an idea worth pursuing and HCC will follow this up.
Other options such as corporate partnerships to cover the cost also need to be explored. We will keep you posted…

Life with a chronic health condition – what is the consumer experience?

Posted on December 10, 2017

For six months of 2017, HCC has worked with the WA Primary Health Alliance and Curtin University on a project to explore consumers’ experience of chronic disease and what kind of care they are seeking from the GP and community based services.

People living with chronic health conditions and a range of community-based health service providers came together at a forum on Friday 1^st December 2017 to hear the outcomes of a focus group study conducted by Curtin University and Health Consumers’ Council in 2017.

The aim of the study was to better understand the current system of GP management of long term conditions, from the perspective of consumers. This information will be used as part of an overhaul of the primary care system being conducted by the WA Primary Health Alliance (WAPHA) in conjunction with GPs.

Forty six consumers were involved in the focus groups which met in Wanneroo, Midland, Armadale, Rockingham, Bunbury and Albany. They represented a range of ages, backgrounds and health conditions but agreed on many key points:

Consumers want a long term relationship with a GP who is a good listener and will work with them in partnership
Bulk billing and reduced up-front costs to care helps consumers to get the care they need
Chronic condition care plans are not well promoted and don’t deliver enough care – especially to people who have more than one conditions
There is a role for specialist “care coordinators” to support better management of different services
People with chronic health conditions should be treated differently within the GP system to people who only require occasional GP contact

You can view the summary of both the provider and consumer consultations here.

Kate Bullow, Project Co-ordinator.

Staying Safe at Home – Patient’s Own Medicines

Posted on December 10, 2017

This is a guest blog from researcher Brock Delfonte.

Managing your medicines at home can be complicated. It is important for your health that you always take the right medicines at the right time and know why you take each one. It is also just as complicated managing your medicines when you are admitted to hospital. Keeping track of all your medicines is vital but can be difficult as there are a number of different names, types and forms that medicines can come in, including:

· tablets, capsules and liquids
· patches, creams and ointments
· drops and sprays for eyes, nose, ears and mouth
· inhalers and puffers
· injections and implants
· pessaries and suppositories.

Most medicines are usually prescribed or provided by a doctor, nurse or pharmacist. Herbal, complementary or “over-the-counter” products like vitamins, nutritional supplements, and natural remedies are also considered medicines, as is anything you may obtain at supermarkets, health food stores or over the Internet.

Bringing in your medicines to hospital is one way you can help hospital staff get your medicines right. Bringing all of your medicines, including anything you keep in places like the fridge or by the bedside, lets hospital staff know what you’re taking and makes sure that you will be able to continue taking them if needed. There are a number of other benefits from bringing in your own medicines to hospital:

· Hospital staff can use some of the information found on the medicine labels to help them, including the details of any doctors or nurses who prescribed medicines for you and the pharmacies they came from
· Having the medicines with you can help you remember exactly how you take them, and help you remember any other medicines you may take
· Having your medicines with you can allow hospital staff to better help you should any of your usual medicines change in any way or are stopped during your hospital stay.

Remember to store your medicines correctly at home, and have them easy to access should you or your family or carers need to collect them to bring in to hospital. Bringing in all your medicines to hospital each time and wherever possible helps hospital staff provide you with the best quality care they can.

Brock Delfante MSHP
BCom BSc MPharm PhD (c)

The Surprising Truth About Youth Mental Health that Everyone Should Know – Guest Blogger: Jacinta Balestra

Posted on September 15, 2017

In his recent presentation at Black Swan Health’s symposium, Executive Director of Orygen (the National Centre of Excellence in Youth Mental Health) and 2010 Australian of the Year, Professor Patrick McGorry highlighted the shocking impact that mental illness has on the economy and the need for youth early intervention services to reduce its economic and social burden.

According to Professor McGorry, mental illness accounts for 16% of Australia’s total economic health burden, ahead of cancer and cardiovascular disease. Despite its dominancy, just 5% of Australia’s federal health budget is allocated to mental health initiatives.

For Australians aged 12-30, mental health issues are more significant than all other health issues combined, so it is young people that suffer the most from the lack of funding – often at a pivotal developmental stage in their lives.

As Professor McGorry outlined in his Perth address, there is a higher economic impact caused by debilitating mental illnesses in young people, as it disrupts their level of education and long-term future employment prospects. Early intervention is consistently more effective for mental health recovery, and with early adulthood being the peak onset for mental illness, youth early intervention mental health services are essential to Australia’s social and economic wellbeing. This is why Black Swan Health and Professor Patrick McGorry are passionate advocates in this area.

Professor McGorry led the way in the development of headspace – a free, youth-friendly mental health service for 12-25-year-olds across Australia; as well as the headspace Youth Early Psychosis Program (hYEPP) – the only comprehensive, free and accessible service for treating early psychosis in young people in the Perth north metropolitan region.

Black Swan Health’s headspace centre in Joondalup is the primary hub for the hYEPP program. It is also delivered from headspaceOsborne Park and Midland. The early intervention model minimises the impact and prevalence of psychotic symptoms on the young person’s daily life, enabling them to maintain or return to their regular activities with as little disruption as possible.

Terina Grace, CEO, Black Swan Health, stated that “The best healthcare outcomes occur when young people experiencing psychosis are provided access to specialised, intensive services as early as possible. Black Swan Health is grateful to have the opportunity to deliver its highly effective early psychosis program to young people in need. The program is based on Australia’s leading research in this field by Professor McGorry and Orygen and has been replicated and recognised internationally.”

Black Swan Health’s Clinical Lead, Dr Gordon Shymko stated “the program’s design involves an assessment team which responsively reaches out to young people in the community; the clinical continuing care team that provides a comprehensive management and treatment program; and the functional recovery team that assists young people to remain employed, in school, at home, to retain relations and lead their normal lives day to day, whilst still receiving world class care and treatment they need.”

If you know a young person who’s having a tough time, let them know about headspace today. Young people can access the services directly through headspace. Alternatively, a referral from a general practitioner or other mental health service-provider is all you need to access hYEPP.

How do you know about your rights in health care when you have come from a country where human rights may not be recognised?

Posted on September 12, 2017

Picture source: New York Times 29 Aug 2009

On Tuesday the 11th April twenty-three people who have come to Australia from Burma/Myanmar learnt about their rights and responsibilities in health care. The session was held at the Herb Graham Centre in Mirrabooka and was supported by two interpreters. Some of the people attending speak Karen and others speak Burmese; have you ever worked with interpreters? Here are a few tips for when you do:
 Speak clearly and avoid using colloquialisms or slang
 Speak in sentences, not paragraphs, the interpreters can only retain so much
 Allow more time, whatever you are doing will require additional time for the interpreting to take place
 Speak to your audience/client, not the interpreter, they are the conduit, not the focus
 If you are imparting information, ask your client/patient to feedback the information you have provided to check they have understood
The HCC provides information sessions to people who may not speak English as part of our mandate to “raise awareness of and advocate for health consumers’ rights in Western Australia”. Sadly, some who arrive here have come from countries where their human rights have been abused. Expecting people to understand they have rights in health care requires them to have both knowledge and confidence and to be proactive when engaging with health professionals. In many instances this is a ‘bridge too far’. Providing people with basic information however is a good starting point and this is what HCC is doing. HCC is also working on an online health rights quiz which will be launched in the future.
I was joined by Diana McTiernan from the Equal Opportunity Commission (EOC) who delivered information on that topic. The two areas complement and support each other and I hope to continue partnering with the EOC. The participants were very engaged in both sessions, some related experiences which concerned them in the areas of employment and healthcare. Evaluations from the session show that people gained knowledge and confidence and that they found the information useful and will share with friends and family. Rather than written evaluations I use ‘faces’ and a small amount of writing that is easy to interpret, people can tick the appropriate ‘face’ e.g.
“After this information session I am more confident about attending medical appointments”

I would like to thank Say Paw from the Metropolitan Migrant Resource Centre at Mirrabooka for inviting me to present and look forward to future sessions and opportunities to work together.

Louise Ford – Manager – Culture and Diversity Program

Complementary Therapies in Cancer Care

Posted on August 25, 2017

“Studies show 77% of cancer patients who incorporate complementary approaches believe it improves their quality of life. 73% state it makes them feel hopeful. 71% say it helps to boost their immune system” (Mao et. al. 2011). In Western Australia Solaris Cancer Care leads the way in providing complementary therapies in cancer care.

Solaris Cancer Care

In July the Cancer Council WA held the ‘Integrative Oncology Symposium: Pathways to Wellness and Survivorship’. The symposium explored new ways to improve symptom control, alleviate patient distress and reduce suffering. The speakers were health professionals and academics who provided their insights into alternative therapies, lessons learnt in the treatment of cancer and patient experience, this included Clinical Professor David Joske founder of Solaris Cancer Care (2001).

“Although excellent resources have long been available to treat cancer medically, it became clear to me that the emotional and supportive care needs of cancer patients and their families were often overlooked.

So Solaris Cancer Care was born – a drop in centre in Sir Charles where cancer patients could receive free support and advice and supervised complementary integrated therapies that would support their mainstream treatment.

It was a radical idea at the time, and still is in some respect. But the idea has continued to grow and over the last 15 years we have opened three additional clinics in Albany, Bunbury and St John of God,” he says (Solaris Cancer Care 2016).

Since its inception Solaris has provided cancer patients with support services and access to complementary integrative therapies. It all started with a comment from a patient, Roy in 1998. Roy said that when he mentioned to one of his treating physicians that he was seeking complementary therapy, they had shut him down. Clinical Prof. Joske said he realised he “needed to get on board with complementary therapy.” By not accepting complementary therapy it had created a barrier between him and his patients so “we weren’t quite rowing in the same direction.”

Solaris Cancer Care Now

Now 100 people per week drop into Solaris, with no medical misadventure. Patients who access the services have a reduction in symptom distress and improved quality of life. Clinical Prof. Joske said during his time treating cancer patients the most valuable lessons he has learnt are from his patients:

The power of words and permission to die – What we say to people (and when) matters!
A role for complementary medicine – Accept how people cope with cancer.
The promise of new biology – cancer is a chronic illness
Survivorship

Clinical Prof. Joske closed his presentation with, as Hippocrates said, “Cure sometimes, treat often, comfort always”. For more information about the complementary therapies offered at Solaris Cancer Care go to: solaris care

Lucy Palermo | Marketing & Communications Coordinator | Health Consumers’ Council (WA)

References:

Mao, J, Palmer, C, Healy, K, Desai, K & Amsterdam, J 2011, ‘Complementary and alternative medicine use among cancer survivors: a population-based study’, Journal of Cancer Survivorship: Research and practice, vol. 5, no. 1, pp. 8-17.

Solaris Cancer Care 2017, About Us page, 2016, Solaris Cancer Care. Available from: https://solariscare.org.au/about-us/dr-david-joske/. [28 August 2017]

Cancer Patient Empowerment

Posted on July 17, 2017

It can be difficult to process the diagnosis of cancer. You are losing control of your body and although you do have choices during the treatment process they are limited. You can’t do the things you used to and you have to accept a new kind of ‘normal’. During this process, it can be difficult to feel empowered as a patient and as a person.

The Path to Patient Empowerment

The path to empowerment includes ‘Surrendering, but only certain elements of your life. It’s not a black and white situation’ says Associate Professor Caroline Bulsara, Notre Dame University. In 2012 Associate Professor Bulsara developed the ‘Patient Empowerment Scale’, for a study to measuring cancer patient empowerment. Using the questionnaire (comprised of 15 scaled questions) she surveyed 210 cancer patients. Through Associate Professor Bulsara’s research into quantifying empowerment she identified these keys to regaining control:

Acknowledging what I can and cannot control.
Familiarising oneself with the treatment regimen and side effects of treatment.
Establish boundaries with family and friends.
Learning to recognise what resources and information are and are not relevant.
Accepting and adapting to changed lifestyle. (2017, Associate Professor Caroline Bulsara, Notre Dame University)

How Providers Can Support Patient Empowerment

Associate Professor Bulsara identified that patients felt more empowered when all communication was shared with them and well documented. They felt more in control of their condition and had reduced feelings of anxiety. Patients spoke of a sense of empowerment due to their ownership of a paper journal, they called the Patient Held Record (PHR).

However, according to Associate Professor Bulsara more work needs to be done to explore the stages of empowerment during and after active treatment.

You can read more about her research via this link: http://www.ccsenet.org/journal/index.php/cco/article/view/23078

Health Consumers’ Council and Patient Empowerment

It is important to remember that it is your body they are treating. You reap the benefits but also the side effects of that treatment and you may have to live with those side effects for years to come.

Doctors must have your informed consent before you start on any new treatment regime. According to Cordasco, ‘In health care, informed consent refers to the process whereby the patient and the health care practitioner engage in a dialogue about a proposed medical treatment’s nature, consequences, harms, benefits, risks, and alternatives. Informed consent is a fundamental principle of health care’ (Cordasco 2013). This means you have the right to say no and seek a second opinion.

If you are finding it difficult to speak up Health Consumers’ Council can help. We can help you to understand and support your healthcare rights. We can help you find and access health services and assist you in providing feedback about your health experience. This free service is available to anyone in WA. For more information regarding our services and tools to support you click here.

Lucy Palermo | Marketing & Communications Coordinator| Health Consumers’ Council WA

References:

Bulsara, C & Styles, I 2013, ‘Development of a Cancer Related Patient Empowerment Scale Using the Polytomous Rasch Measurement Model’, Cancer and Clinical Oncology, vol. 2, no. 1, pp. 87-102. Available from: Cancer and Clinical Oncology. [13 July 2017]

Cordasco, K 2013, ‘Obtaining Informed Consent from Patients: Brief Update Review’, Making Health Care Safer II: An Updated Critical Analysis of the Evidence for Patient Safety Practices, no. 211. Available from: National Center for Biotechnology Information. [14 July 2017]

My Grandson the gift: A new world of unconditional love & care

Posted on June 27, 2017

My Grandson the gift

Gifts from God come in all kinds of wrappings and I treasure the gift of my Grandson. I am a Grandparent with fulltime care of my fifteen year old grandson James who has multiple disabilities, including Downs, Autism, Epilepsy, Hashimotos and sensory disabilities. He has had a recent diagnosis of Juvenile Arthritis. All issues apart from Downs have been diagnosed since he has been in my care.

I love my boy, for many reasons. He has made me a much better person. He has taught me to be kinder and more understanding and above all I have learned patience. He has shown me a new world full of unconditional love and unending joy.

I wish you could see my laughing boy. But it hasn’t always been that way.

How he came into my care

This child was a victim of relentless parental neglect until he was removed to my care in 2007. There was no ‘early intervention’, minimal medical contact and very occasional schooling.

My wee man has a severe intellectual disability; I have had to accept that he has an IQ of 40 and an intellectual age of 6 years. He will never hold a salaried position; nor will he ever drive a car. BUT; he will never have a tax problem nor will he have a mortgage so, who has the disability?

He has progressed from an 8 year old nonverbal lump who weighed 15kgs, who sat and rocked on the floor – into an active exuberant boy who loves to run and play. This boy has undergone a number of medical procedures and we have had some great results but it hasn’t finished. From thinking that it was normal to wear nappies, it has taken a huge effort but he is now toilet trained! He is very proud of his major achievement.

His speech is progressing and he can (for the most part) make himself understood but I realize that he will never be fully articulate and will always need help.

At mealtimes, he always sits at the table and uses cutlery when eating. He has developed his own taste in food but ice-cream is always there! He has his chores that he zealously guards. He has learned some manners, please – thank you, and asking politely but we are still working on it.

James helping the Farrier

My boy was absolutely terrified of water but after many hours at our local pool slowly, slowly I got him into the water, now swimming is his most favourite pastime. So much so Grandma had to visit Gumtree for a pool. He has become a very sociable boy who loves having his friends visit, especially for a pool party and Grandma’s BBQ.

He attends a special education school every day and loves it. He has developed a special relationship with his teaching staff. He just loves them and his school. Their dedication and love cannot be underestimated. School staffs have been the major strength in his improvement.

Now my little man has grown, he is at High School. What a joy to see him grow, healthy and happy. So many people said it was doubtful but we did it. We survived together!

I don’t feel that I have done anything special for my wee man but love him and I tell him that every hour of every day. He thrives on hugs and kisses and so do I, we love each other and I think that is the key.

Without wanting to sound melodramatic, He is the reason I get up in the morning and I thank God for entrusting him to my care.

Shirley is one of our members. She wanted to share her story to highlight how children with a disability can thrive when provided with support and love.

In September 2016 Shirley was diagnosed with stage 4 Cancer. She is currently receiving Chemotherapy treatment. During this time the Active Foundation have been an incredible support providing respite care for James picking him up from school and dropping him home later in the week. Allowing Shirley to time to recover from her Chemo treatment.

Pictured: James on Lake Taupo