‘Our story’: An experience of Parkinson’s Disease
One of Healthwatch’s main roles is to collect feedback and experiences from people of a range of backgrounds and communities. We can use this feedback to help amplify peoples voices and make these experiences known to decision-makers.
Healthwatch Lancashire was contacted by the Tara Centre in Lancaster, regarding the poor experiences of those living with Parkinson’s disease.
As a result, Healthwatch Lancashire gathered the following case study:
We are a mature married couple living in the Lancaster area who are living with a Parkinson’s Disease diagnosis.
My father had Parkinson’s but I wasn’t aware that I could also have the disease. When I was diagnosed, although the neurologist didn’t give me much of an explanation of what Parkinson’s disease was, I was aware of what I was looking at due to my father’s experience.
When I received my diagnosis, we had a few months of panic wondering what the future would hold for us, then we decided to be proactive and started to research the disease.
We quickly learnt that on Google half of what we read was true and the other half wasn’t. With time, my wife, who has an MA on Historical research, started to use Google Scholar to find more scientific papers to back up some of the information but a lot of people may not be aware of this option when using Google.
We discovered that there isn’t much support available and it’s a condition that many don’t want to admit they have or talk about, especially in Asian communities.
As it is getting easier to diagnose the numbers of people registered as having Parkinson’s is rising.
We are now working hard to raise awareness of Parkinson’s Disease, and we want to be a voice for those who suffer with it.
My wife suffers from rheumatoid arthritis but cares for me so we try and work together to keep things running, but it can be difficult at times. As we have no children to help and support, and as we head into our seventies we are very worried about the future and how we will cope.
As part of my condition I am unable to sleep for more than an hour or two and this has had a big impact on us as I’m exhausted; this has also lead to leg tremors (RSL – Restless Legs Syndrome) meaning we have slept in separate beds.
My original medication to help me sleep didn’t work but I’m on a new medication now (which I had to push for), although it’s too early to tell if it will work.
I have had agoraphobia for a long time, but until last April (2022) I was able to cope with it and I was able to go out. Since my situation with sleepless nights has worsened my agoraphobia has returned.
We don’t qualify for most benefits around care as we are considered to be above the threshold financially, although we have been awarded by LILS (Lancashire Independent Living Service) part of a which is to be used as a support plan.
Our GP who knew us for over twenty years has retired and our new GP isn’t as familiar with Parkinson’s, and I had to go through a series of tests in order to establish if RLS (Restless Legs Syndrome) is related to the Parkinson’s disease or some other cause.
We saw a neurologist at Lancaster Hospital twice a year and had two Parkinson’s nurses who we could talk to on the phone. The neurologist doesn’t have a clinic at Lancaster Hospital anymore and my appointments moved to Preston Hospital; however, we don’t drive and with my condition as well as my agoraphobia it’s too far to travel. We’ve managed to sort telephone appointments but it’s hard to have a proper chat in a ten-minute appointment.
Following my telephone appointment on the 7th of February we requested a copy of the letter that was to be sent to my GP, five weeks later we received both ours and our GPs letter. We found out that although the letter was dictated on the 7th of February, it was actually typed on the 10th of March, and we received the letter on the 15th March. It was the 20th of March when I had in my hand the new prescription.
We took our GP their copy of the letter and it cost us £5.20 in travel to get there and back. We have spoken with PALS (Patient Advice and Liaison Service) about some of our problems; we have also spoken with our MP Cat Smith.
There is a real need for a neurologist clinic at Lancaster Hospital like there used to be so that people in north Lancashire have access to them without having to travel a long way when transport/cost is a problem.
The Parkinson’s Nurses have also stepped down and this has meant that I feel like I’ve lost a year on things that could have been sorted in a few weeks. A new Parkinson’s’ nurse is now on duty, she has an email address we can contact her, we have been also told that there is another PD nurse under training currently shadowing.
My wife looked into counselling for our mental health, but after the programmed 8 sessions, although the counsellor was highly competent, my wife and the counsellor both agreed that the offered support doesn’t fit the needs.
There needs to be more specialised counselling for carers and people with Parkinson’s; something like the MacMillan model for cancer and carers would be good.
When we were researching Parkinson’s we found that there was very scientific articles and basic pamphlets with nothing in between; there is a need for something that talks around taking medication and other practical advice. Funding for creating something like this seems to be lacking.
We have created My Parkinson’s Diary that people with Parkinson’s can use to record their days so that when they have a consultant appointment they can refer to it rather than trying to remember everything; we are selling these for a bit of extra income.
There is very little support for people with Parkinson’s in the area, and we have become part of groups born by necessity, where we can exchange our stories and experience.
People with Parkinson’s need easier access to a neurologist, Parkinson’s nurses available to talk to, tailored counselling services and more practical advice and support.
Healthwatch Lancashire have publicised this case study to raise awareness of the challenges faced by those with Parkinson’s. This will be kept on file which we can use in future when working with decision-makers and NHS leaders.
Below is a range of support services for those living with Parkinson’s disease:
Parkinson’s UK – A registered charity offering advice and information including local branches and activity groups
Parkinson’s Foundation – A registered charity offering advice, information and resources.
Parkinson’s Care and Support UK – A registered charity which focuses on improving the lives of those affected by Parkinson’s