I was reading a few posts on a Facebook Page I am a member of for people with Parkinson’s. The person concerned was asking for someone who could act as an advocate for them to try to navigate their way through funding information. They also wanted to know about requirements for supports for at home or moving into a facility.
I gave her a few suggestions – based on my personal and professional experience – and I was struck by the fact that there seems to be quite a bit more in the way of supports in Australia than there are here in New Zealand. A particular issue for those of us with a degenerative medical condition is that if we have to give up work and our partner works, that often there is no financial support. This can be difficult if still trying to service a mortgage, make car payments and in some cases, raise children. It all costs money! Just because your income reduces – as we all know – it doesn’t mean those costs go away!
If, however, you have an accident and are as a consequence unable to work, then ACC can pay you for loss of earnings, treatments and equipment. It really is unbalanced.
The thing is too, if you are not used to the health systems, then it can be a difficult thing to navigate and find the information you need. Even knowing where to start from can be a challenge. I would always recommend that the best place to start is your GP. They should know the health pathways available to their patients and in many cases can refer them to services and supports.
The other thing that surprises some people is that you cannot just decide to go into a facility. It might have been the case at one time – though not in my experience – but the thing is that in order to go into a resthome or hospital level care you need to be assessed as needing this level of care. Often funders will decline someone to be funded to enter into residential care, if the person has not had any services at home. Again, a discussion with your GP is the best way to go as a first step.
For anyone with a long term condition – whatever that may be – your GP is your main health support in the community. It is important to have a GP that you know and trust, who gets to know you as an individual and is able to notice when things are changing and perhaps refer you to a specialist such as a Neurologist. Unfortunately, in many medical practices, they have what I often refer to as a ‘pot luck doctor’ where you get to see whoever is available. Keeping an eye on your general health is important too. Your body may have other things going on other than Parkinson’s – I know mine does – and other conditions may not get the attention and monitoring they need if Parkinson’s is your only focus.
So often I hear people complain about their GP, for whatever reason and express they have not given them the care that they need, or they don’t feel they can talk to them, or other issues they may have with them. The first thing I would ask is ‘why don’t you change GP?’ Any of us – especially as we get older – with Parkinson’s or not need to have faith in our GP and a good and trusting relationship. It is of vital importance to have that support.
So, if you are feeling in need of support in relation to your health, make sure that your GP is your first stop and hopefully, they can point you in the right direction.
My journey with Parkinsons 