This post is going to be a rant for which I apologise in advance. Its a constructive and hopefully positive rant so I’m hoping the moderators approve it. Right, here we go.
Last Sunday, 02/04 I attended an information day organised by Elaine from the Parkinson in the Marches group. This was the second event of its kind and both have been brilliant - full of information, ideas, thing that work (and things that don’t!) and the opportunity to meet fellow sufferers and talk / listen.
One thing has become abundantly clear from meeting other Parkinson sufferers is that the help / care / medication received varies wildly from area to area and health board to health board to such a degree that its shocking and quite frankly unbelievable.
Let me give an example. I was diagnosed almost 5 years ago, aged 50, and during the last 5 years I have seen my consultant every 6 months, and my Parkinsons nurse a similar number of times. I spoke to people last week who have been diagnosed as long as I have but during that time have seen there consultant once or twice and don’t even have a dedicated nurse - that’s shocking. The level of information regarding the condition that is available is also shocking. I spoke to people who don’t know why there on a specific medication, are not aware of the importance of medication timing or how protein impacts on medication etc etc.
It seems to me that once diagnosed you are left to research information for yourself or you have to turn to National or local organisations (in my case Thank-you Parkinsons UK and Friends of Parkies). This shouldn’t be so. Nobody reading this needs me to tell them how much Parkinsons impacts upon and affects their lives. Its beyond comprehension to the average person (its just the shakes. Right?!).
I keep reading that Parkinsons is the fastest growing neurological condition in the world today in terms of people diagnosed. Its about time that Governments / Health Boards and Pharmaceutical companies started sitting up, taking notice and doing something about this soul destroying condition to try and end it. It shouldn’t be the responsibility of charities and support groups - although I am more than grateful for their existence. Right - rant over!!!
This post is going to be a rant for which I apologise in advance. Its a constructive and hopefully positive rant so I’m hoping the moderators approve it. Right, here we go.
I totally agree 100%
with everything you say Mark. My Husband was diagnosed 7 yrs ago but was told he had probably had it 4/5years prior to his diagnosis…so average time now is 11/12yrs with PD now. So it is progressing now…
In that time I can count on 1 hand the number of face to face appts with a consultant and it’s even less for a PD nurse… if he is meant to be seen every 6 months that’s at least 14 appts in his 7 years, he’s actually had 5 appts .We have had to fight all the time for anything. Our GP will not deal with anything related to PD as he says he “knows a little about lots but not a lot about anything”…hence his knowledge on PD is no better than what we can read on the internet. When my Husband has his yearly medication review at the surgery it is with a very young healthcare assistant who tells him everytime to stop shaking his arm as she can’t take the blood…Everytime I tell her he has parkinson’s and cannot stop his arm shaking .I asked her if she knew what his medication was for once and she actually said no…I despair at this as she is the person who ticks the boxes to say my husband can have his Sinemet for another year!! We attend a local monthly group and every person there has a different relationship with their consultants and PD nurses…some get seen every 6 months and the Nurses are on the end of the phone for them…sadly our experiences are very different. Also another local group about 10 miles from us have speakers and nurses visit every month to give advice etc and people from PDUK turning up…but people need to be able to drive to get to that group due to the times of it . Our group does not get anything like that? We ask why? I am part of the local Carers UK and carers from the other group are given free health checks and one lady has been given a free massage and spa day( courtesy of Carers UK) no one in our group have been offered anything? The whole thing is totally wrong…there is hardly any support in our area. I get really upset with it all as it’s now Parkinson’s Awareness time world wide but there is not one thing in this area advertising this? April 11th is Parkinson’s awareness day all over the country and Parkinsons UK have got nothing at all in this area to get the word out there…This is the same every year…(yet the media is full of children’s charities,animal charities,heart charities etc all being promoted. Please do not think I am saying these charities do not need help as well all charities need our support)This should be a time for Parkinson’s UK to be shouting out to the country and the government to be getting more money for funding on board…we keep getting told that research is ongoing but from where we sit we can see none of it…I get loads of letters from Parkinson’s UK asking me to donate to help them…Why? We and our loved ones are the ones living every day with parkinson’s! Parkinson’s UK should be putting more pressure on the government for more funding for more consultants and nurses and finding medications or anything that will actually help to stop or minimise parkinson’s in it’s tracks … my Husband was put on Sinemet when he was diagnosed 7 yrs ago …the gold star of medication he was told… We looked it up and it’s been out for over 50 years now…so I wouldn’t call that gold star medication as it’s run its course now as different medications are added to Sinemet as Parkinson’s progresses , to top it up …the only time parkinson’s hits the news sadly is if a “celebrity” is diagnosed with it… But everyday people need help every day. We are not in the same financial situation as celebrities so cannot afford private treatment as no doubt they can…
I am sorry if this sounds harsh but Parkinson’s UK you need to do a lot more and be more “out in the public domain” for every single person with parkinson’s needs help today not in years to come…and please do not tell me to ring the helpline as I have done that before and they are limited to what they can do as they are on the end of a telephone and can give advice but not hands on support …which I have actually been told by the nurses on the phone.
Parkinson’s is an awful thing and watching our loved ones on a daily basis is heartbreaking…
I can only sadly agree with all that has been written here. I have on more than one occasion made comment that one of the most shocking things that has come to my attention since joining the forum was the inconsistency of PD services across the country. The NICE guidelines state quite clearly that people with Parkinson’s should be reviewed every six months. I have been one of the lucky ones having appointments every six months and able to contact my medical team between appointments if needed. Luck however should not come into it. Living with any chronic condition would be challenging but arguably Parkinson’s is one of the most challenging with motor and non motor symptoms that can affect any and all aspects of life and complicated still further by the fluctuations that can change as quickly as hour to hour never mind day to day or week to week. I am well aware of the pressures the NHS and others are under at the moment but with such a large number of people affected by PD it is way past time this postcode lottery was given some priority. We .should not have to battle just to get the minimum service to which we are entitled
I know exactly where you are coming from I was diagnosed by the neurologist about 8 months ago I then waited 4 months before seeing a pd nurse who spent a total of 20 mins telling me how common PD is and do I want to up my tablets that’s it the rest I have found by reading on here or the internet lots of information but can be confusing at the moment i have been in pain with my legs and shoulder since xmas bad dreams, and find it hard to get the words out sometimes, I know there not a lot anyone can do but would be nice if it was more simpler to get to talk to someone rather than having to wait for months on end , that’s it just my thoughts take care
Hi Mark, I agree 100%. My issue that I have highlighted here within this forum is the fact that hundreds of millions are being spent on research which is good, but you have ask where is the money going ? We are currently using the " gold standard" Sinemet which I believe is getting on for 50 year old !!! lets face if you were a “researcher” and receiving millions from PUK and MJFF would there really be an urgency to find a cure or at least better medication ? forgive my cynicism but we should be asking some serious questions .
Got to add my tuppennyworth to this. Husbands Parkinsons went undiagnosed for 25 years (Excused as frozen shoulder, trapped nerve in shoulder, knee ligament problem, part of his diabetes type 1…). All I knew was his mood and memory and Diabetes control were increasingly volatile. I’d only just met him at the start of his frozen shoulder so don’t really have much experience of ‘before’. I was just plain scared of his volatility during lockdown. I was WFH. He ended up being sent home sick from work a year before he retired, as a health and safety risk as he was too shakey and anxious and couldnt remember things, just when he was being diagnosed. Long story short, I now go with him to neurologist. Examination is standard and cursory, and his Madopar dose gets upped. We’ve gone from 6 monthly to annual appointments. He may have seen Parkinsons nurse once. He’s spoken on the phone to her a couple of times, the last 18+ months ago. I’m not allowed to speak to them unless my husband approves. He doesn’t! I have no caring support as we are childless. I was made redundant 6 months ago. A mixed blessing as I am now his carer and scapegoat for everything he can’t do or remember or gets confused or angry about. He is too anxious to go anywhere or do anything alone. He is affected by any loud noise, people, traffic. We got married last year to reassure him I would get everything if he died. He has given up driving as he realised he’s not safe and I don’t drive. We won’t go to “local” Parkinsons group as we don’t want to be defined by the disease and it’s at an inconvenient time and location and most members are the widow/ers of sufferers. What can we do? He hates me more and more as I’m to blame for not understanding, not helping, not doing, not sympathising, not anticipating his wants, needs, confusions, delusions, made up memories etc. We’re basically waiting for him to die, which could take decades, and we get no help or advice to deal with his deterioration. Not that he would take any help or advice. If you’re incurable, you’re forgotten
Im in a bit of a tissy at the minute. Getting help used to be pretty good (Leicester) but now the PD answering machine isnt monitored due to staff shortage and you cannot get through to them, same with GP.
My problem is my Sinemet and Entacapone was changed to Stanek in February. I also have a Safinamide in the morning and a slow release at night…
Well they have removed the Entacapode and slow release from my prescription instead of Entacapone and Sinemet… So now I have no slow release… nightmare.
Ive been trying and trying to get help but nothing. I have neurology mid May si have resided the fact ill have to suffer until then.
We’re sorry to hear about your current challenges. Just in case you are not aware, we have a free and confidential helpline staffed with knowledgeable advisers who have access to a range of helpful resources. We recommend reaching out to them to see if they can help you find care in your community sooner. You can reach them on 0808 800 0303.
Wish our warmest wishes,
Thank you all for this interesting and important thread. We thought it might be helpful to give a short update on research progress in response to some of your comments and questions.
One of our missions as a charity is to develop better treatments and a cure for Parkinson’s in the shortest possible time frame. In the past 50 years we’ve made vital discoveries that have revolutionised our understanding of Parkinson’s and the brain. We have a better understanding of the influence of genetic factors. We are beginning to map the complex chain of events that leads to the damage and loss of precious brain cells. We know that, although people with Parkinson’s share symptoms, each person’s experience of the condition and response to treatment is different. These discoveries are allowing us to take the next steps in research.
There are many ongoing studies that may lead to a new treatment that could slow or stop Parkinson’s. For instance research into vaccines, gene therapies and stem cell therapies for Parkinson’s. You can read this blog post to learn more about the progress of Parkinson’s research so far and what looks promising for the future. Before treatments are approved however, we need to make sure that they are safe and effective. The drug development process takes time to ensure there is enough evidence of this, which we can understand is frustrating, but it is essential.
While we’re working on finding treatments to slow or stop the progression of Parkinson’s, we’re also researching ways to treat symptoms and improve quality of life for people with Parkinson’s, through exercise, diet, physiotherapy and using apps and devices. We select the research we fund based on the priorities of people with Parkinson’s which you can see on our website.
I hope this gives an insight into the progress that is being made. You can read regular updates on our research news page where we share research updates from different types of studies.
Please do get in touch if you have any further questions.
Thank you for this Reah, it can be hard to keep tabs on all that is going on nor is it easy to always be patient which I think is reflected in some of the posts. Research is of course important, but of more direct concern to me and the post that started this thread is the inconsistent service for people with Parkinson’s across the country. Research may well be making progress in all sorts of areas but what use will it be to those of us who can’t access the service to which we are entitled. Those who struggle to even know who their consultant is, the difficulties in being able to contact them when worried about a development or medication, not having a review appointment for a year or more etc etc. The only thing many can do is go to their GP, not easy in itself at the moment, but many admit they don’t have the expertise to help. No chronic condition is easy to live with, they would all bring their own challenges but most don’t fluctuate as Parkinson’s can, most don’t have the complex and broad range of non motor symptoms that can have a huge impact on physical function, most don’t carry the range of symptoms that can affect individuals so differently even when on paper apparently the same. Too many of us are left floundering not knowing which way to turn and yes I know the helpline is excellent and will do what they can but that’s no substitute for having proper access to Parkinson’s specialists on a regular basis so people understand what is happening to them and have good advice on its management. If there was a sudden big breakthrough in Parkinson’s treatments, how many would have to fight to get this new drug or approach simply because the service in their area is so poor. People living with Parkinson’s right now have a right to the best care for a complex condition that can be provided at the point we are currently at and we should all have the same access to appropriate services as answers begin to emerge from the wide ranging research you described. It seems to me that we are a long way off that at the moment for far too many people.
Thank you for your response. You are right, we hear from people with Parkinson’s and their loved ones everyday about the difficulties they face in accessing the healthcare services they need. We believe that access to health care and the quality of care people receive is being impacted by shortages of the key health professionals to provide the care and treatment people with Parkinson’s need.
That is why we are campaigning to call on the government to grow and upskill the Parkinson’s workforce. It’s called ‘Can’t Wait’, please follow the link to find out more and join the campaign .
I hope this is helpful.
Thank you Reah. It is indeed helpful. I heard about this campaign recently but hopefully some who may not have will pick it up through following this thread.
This is a fantastic rant!
It needs to be listened to
Why is this not being addressed?
I too find myself asking for help on dosing from the Parkinson’s nurses , on the phone helpline at Parkinson’s UK
This is just WRONG
What can we do about it
We HAVE to act!!!
I will be speaking to my MP
Parkinson’s UK why are you not Listening??
Why are people with Parkinson’s right now , being left to treat themselves.
This is an absolute disgrace!
What is the point of spending loads of money on research when people with Parkinson’s are just being left.
Why is this being allowed to happen for goodness sake
WE MUST ACT
Is anyone in power listening??WE MUST ACT
I came on here to ask for advice as to where/Who I need to contact as my mum has not seen a nurse/consultant since we were in lock down. We have been wondering if she had somehow dropped off of a treatment register or something but it appears after reading this thread that this is not an isolated case. She has had Parkinson’s for about 10 years (she is 79 now). I have noticed a rapid decline lately and she won’t contact the doctor as she thinks that she was told that “there are people with worse symptoms that needed treatment ahead of her” the last lime she was seen. I thought that she must of miss heard this? Unfortunately she can’t stand for very long and is worried about being away from a bathroom, so won’t let me organise a visit to the doctor. Is there somebody that I could contact to get her back on the treatment register. Thank you
We’re very sorry to hear about your mum’s recent challenges. Sometimes it may be necessary to find mental health support in order to get proper medical support going. Please reach out to our free and confidential helpline on 0808 800 0303. They have a range of services they offer, including locating local resources, so please don’t hesitate to contact them when you can.
With our best wishes and warmest welcome,
Thank you for your post. We hear everyday about the challenges people with Parkinson’s have in accessing the healthcare services they need. We agree about the need to act, which is why we are campaigning to call on the government to grow and upskill the Parkinson’s workforce to improve access to services. Please follow the link to learn more about our ‘Can’t Wait’ campaign.
On your point about dosing advice. Our helpline nurses cannot comment on individuals medication dosing because any medication changes need to be made in consultation with your Parkinson’s nurse or consultant who will have access to your medical history and can assess medication changes appropriately. Apologies for not being able to help further on that occasion.
I didn’t know about this, missed me somehow.
I landed up in hospital last week , in Aberdeen
My room quickly became a horrendous torture chamber. I had to fight for every dose, every 4 hours.
Quite honestly, it was horrific.
There didn’t seem to be a single member of staff who knew anything about Parkinson’s meds. Nightmare!!!.
Oops forgot to say, have joined the campaign!!