Increase Mental Health Support for Patients with Cystic Fibrosis to Meet Standards of Care

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My name is Morgan Gollan, and I am a patient of the John Hunter Cystic Fibrosis Adult Specialist Centre. Currently we have a social worker 2 days a week, and no psychologist. Within the last few years there has been a high turnover and long periods without a social worker at all so it would seem the current model of funding isn't working for whatever reason. The current situation does not address continuity of care, nor does it form the basis for a young child/adult with CF to form a trusting relationship with a health professional.

Personally the last 6 months have been difficult after being diagnosed with depression and loosing one of my best friends to Cystic Fibrosis. The need for the social worker and psychologist was imperative to my health, my journey and helping me. I'm so grateful for the help I received and the experience highlighted to me the value and importance of these health professionals in CF care. They should be an essential team member that every patient can access not just at crisis point. We should be proactive about mental and psychosocial health not reactive. 

As a patient I think our voice is important and often reflects needs of a community well. And as such I feel, along with many others, that the needs of more then 200 adults and kids with Cystic Fibrosis in terms of their mental, psychosocial health and general wellbeing are not being met, in fact are being ignored by the local area health service.

We can be doing better.

On any Cystic Fibrosis Specialist Centre team, 1 FTE social worker and 1 FTE psychologist for every 75-150 patients should be appointed, to meet the Cystic Fibrosis Standards of Care, Australia 2008. 

These positions are vital to ensure a standard level of care for all patients with Cystic Fibrosis and I would welcome the NSW Ministry for Health to address the issue of funding for a permanent social worker and psychologist for the Adult Cystic Fibrosis Clinic at John Hunter Hospital. To address why the mental and psychosocial health of 119 chronically ill patients doesn't matter. 

Additionally I would like to ensure that all patients with Cystic Fibrosis across Australia have access to the appropriate care on their team regardless of the clinic they attend. To ensure the proper funding for social workers and psychologists in order to achieve continuity of care, better patient outcomes and mental and emotional wellbeing. 

If there is no change then what will the ministry say: 

* To the Newly diagnosed family accepting a life long, life limiting illness and the daunting nature of this.
* To the patients and families navigating preschool, school, university and having to advocate for them/ themselves
* To the patients being discriminated against at work due to illness and disability
* To the patients struggling to access NDIS/centrelink
* To the patients struggling to afford medication/food and living week to week
* To the patients just struggling
* To the child who just lost their first CF friend. And they realise they could be next. They realise their own mortality.
* The family that looses someone with CF
* The patient in palliative care as a young adult
* The patient told they are ineligible for transplant. That they will die.
* The patient who doesn't want a transplant
* The family/carer/partner having to go to work while their loved one lives out their last days/weeks waiting for a transplant because they centrelink won't grant them carers allowance despite needing 24 hour care. This shouldn't happen and social workers can often influence the centrelink process. Patients should be surrounded by loved ones during this time not a centrelink battle.
* The patient who would rather drive off a highway into oncoming traffic or jump of a cliff then face another day with CF
* The patient who just can't handle the physical/mental/emotional pain of CF anymore
* The patient who sees death as a better alternative then fighting CF
* The patient who feels consumed by CF and doesn't know a way out
* The patient who can't have children
* The patient who looses their wife/husband/partner/friends/ because they can't deal with CF

One in five Australians experience mental health concerns at some point in their lives. In Patients with a chronic, life threatening condition such as Cystic Fibrosis rates of anxiety and depression have shown to increase by 25% in adolescents compared to the normal population and 35% in carers. This highlights how essential it is for both paediatric and adult patients to have access to a multi disciplinary team that includes a social worker and psychologist in order to achieve optimum health in the long term. 

As a patient living with the complexity of Cystic Fibrosis I can only ask you to help by signing this petition to help increase funding of these services for patients. As I know first hand the benefits of being able to access these health professionals. 

Thank you 

Morgan Gollan