Another Step On The Journey

Parkinson’s Disease:

It’s 3 months since my dad was diagnosed with Parkinson’s disease, and so we set off on yet another journey of medication and assessments. In my last post I mentioned that I had been informed about a therapy group for newly diagnosed patients with PD but I have yet to discover where this fits into my dad’s treatment. My first signpost was his GP, this is who I was directed to in the first instance but unfortunately after a few discussions with the GP receptionist I felt I was no further in finding out if my dad could be referred to this group.

A few days later my dad received a letter from the GP informing him that he had already been assigned a PD Nurse specialist, and that was who he would discuss his condition with. However, I had been told by a community health practitioner that this was not the same as being referred to the therapy group, and that every one who is diagnosed with PD is assigned a PD Nurse. So here we are again, with very good information and the assurance that there is a PD therapy group out there somewhere, but we have no direction on the access to this group.

Why is signposting to these specialised areas so difficult, and why do patients not get the same pathway of care, when these services are obviously crucial to their wellbeing?

Early this month I took my dad to see the PD nurse specialist at out local hospitals neurology department, this was a pleasant meeting the specialist was very patient with my dad, but didn’t have any of his recent medical history. I found myself going through the whole journey again, discussing dad’s blackouts, his heart attack, his hospital procedures and medication, as well as the care and assessment that had taken place over the last 9 months. I am so glad I was able to accompany my dad to his appointment, otherwise none of his medical history would have been discussed, due to my dad’s condition, his memory lapses, and his understanding of what he has been through and how this is all relevant when he speaks with new clinical or medical staff.

I always give my dad the time to answer everything for himself, but it’s at this point that I realise just how much he forgets, and cannot give a true picture of everything that is important in these assessments. This is where I then join in the conversation and fill in the gaps, so the true picture of his health is presented.

During my dad’s assessment with the PD specialist, I asked about the PD therapy group, but it seemed she did not know about this, and proceeded to ask me what I understood about it! I was very disappointed at this lack of information but proceeded to inform her of what I had been told by the community health practitioner. I gave her the name of the person who I had been speaking to about this, and she informed me that she would copy her in on the report, and make sure an email was sent to this person, who would probably get in touch with my dad to invite him to the therapy group.

Another example that signposting to these vital services is just not working, we have some brilliant services out there in the community but yet not everyone who needs access to them has the information they require.

Who is responsible for signposting?
Who is responsible for making sure the pathway is correct?
Who do we hold accountable for the delay in patients care?

I have been informed that the PD therapy group is available for newly diagnosed patients of PD as they provide essential support and advice on a number of things that patients are now experiencing such as:

Medication (and side effects)
Balance
Walking
Eating
Swallowing
Retraining and reassessing their environment.

I am hoping we get a referral to this therapy group, as I don’t know enough about PD at present, and I am trying to take in so much new information as well as discussing the condition with my dad to help him to identify these changes in his condition.

In the meantime after a recent assessment of his state of mind after some evidence of memory lapses and forgetfulness my dad has been referred to the memory clinic. This is another service provided by community health. He has been showing a number of changes with his recall, short-term & long-term memory, and I have been worrying just how much this is now deteriorating, or if PD will have a further effect on his wellbeing.

Hopefully in my next post I will be able to discuss both options mentioned above, the PD therapy group and the memory clinic assessments.

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