Some months ago one of my GP’s from the practice I attend referred me to the local NHS Occupational Therapy buildings. I had thought this was something to do with walking & my mobility issues, but I was slightly wrong in this opinion.
I had this meeting yesterday after a 2-3 month wait. The building was large & there were 4 friendly staff typing away. No other customers bar me.
I was shown into a strange large room that had a toilet, a bath, a hospital style bed & quite a lot of the sort of equipment that disabled people might use.
The first thing she did was ask how I managed in my flat? Could I get out of / into bed? Could I get up off my chairs & toilet? Could I get into & out of my bath? Could
I use my shower?
She had of course found my Kryptonite as I struggle to get up off my settee. I struggle to get up off the toilet & I struggle to get into & out of the bath. I even owned up to a few falls in the bath that soaked the floor but didn’t hurt me.
So we contacted a local company & I get a raised toilet, a stand that helps me get off the toilet & something that raises my settee by the required 5 inches. Also miscellaneous handrails by the bath.
Most useful additions to my flat & free of charge. I also tried an electric unit that lowered me into & raised me out of the bath. This unfortunately took up too much space as I like to lie & soak in the bath.
We got a whole new level access shower and new bathroom decorated with tiles and new radiator - free from the local authority after an assessment from the local authority OT department.
I recently had a visit from the Community Rehab team following a fall and being seen by paramedics, the are fitting my shower with grab rails and raising a chair etc. I cannot praise them enough they are the only people who appear to take my PD seriously.
That is our experience too! By far and a way the best professionals have been the neuro physio rehab team which includes an OT. They come into our home, make practical suggestions, get equipment and also do physio. Highly rate these folks!
Hi Steve2. I join the forum today because my wife has developed Parkinson recently. The sudden onset of it was a complete shock, and suddenly I find myself with an overwhelming list of things to do, and people to contact. So your post helps me, because it assures me that the local NHS Occupational Therapy group (who we’ll be talking to in 10 days) should be able to help. I had difficulty enough providing them with photos and measurements of step, chairs, paths etc. etc. What’s been a real help is knowing that this sort of support for her will help me support her. So I am heartened that you feel so positive about the efforts these people go to to help.
Best of luck to you and thank you.
sues2ndflute
I know it can seem difficult to understand why such measurements etc are necessary but I hope once you speak to the OT team you will see just how important these things are, along with good techniques, in enabling someone to be more or maintain their independence or be easier to assist if necessary. I think you may be surprised - it will seem like commonsense, so simple you will probably wonder why you didn’t see these things for yourself, but provision of equipment etc is actually quite a complicated business and only seems easy once you are aware. It may interest you to know that occupation therapy requires at least a BSc qualification to practise as a therapist - an OT assessment can look simple but don’t be fooled, there is a lot of science behind it. I hope you have a good experience.
Good evening suesbestmate … delighted I could be of some help. There is a lot of help out there. For example I am starting a 6 week course at the Conquest Hospital in 2 weeks time with their Neurological Physiotherapy department. 4-6 of us Parky People humping iron in the hospital gym. There will be the person running the course, some sort of personal trainer & a volunteer. All giving up their time to help us. I’m not really a gym person but I’ll give it a go. I don’t expect to hump too much iron, we will see.
I went there for an assessment a couple of weeks back at the hospital. I was given a number of physical tests & I achieved a mark of 26/50, not a great score I know &
I am surprised how low my score was. I was amazed how many simple tasks I could not do … like standing on one foot. Maybe the course will help, we will see. But good that someone is trying. A shame that one of the tests wasn’t falling over as I’m sure I could do that.
On the medical side my Neurologist has left the NHS & my appointment got cancelled. I got diagnosed with a rare form of Neuropathy & that is as far as it goes & my New Atrial Fibrillation is treated by drugs alone as there is a 51 week delay before I could possibly see anyone.
On the non medical side I also have a PCN appointment coming up in my home next week …
What does a PCN do in NHS?
Primary care networks (PCNs) build on the core of current primary care services and enable greater provision of proactive, personalised, coordinated and more integrated health and social care.
I am not sure what this PCN will do for me, we will see. I will let you know if you wish.
I live on my own in a nice one bed flat & I have also been given Attendance allowance. Around £70 a week to add to my state pension … again a real help.
I have also just received my Blue Badge so I can park close to where ever I need to go. Amazing how much help this is.
Best of luck with your problems. Any questions please ask.
Tot’s posts are always well written & worth reading for his / her insight.
Hi Tot[quote=“Steve2, post:1, topic:39447, full:true”]
Some months ago one of my GP’s from the practice I attend referred me to the local NHS Occupational Therapy buildings. I had thought this was something to do with walking & my mobility issues, but I was slightly wrong in this opinion.
I had this meeting yesterday after a 2-3 month wait. The building was large & there were 4 friendly staff typing away. No other customers bar me.
I was shown into a strange large room that had a toilet, a bath, a hospital style bed & quite a lot of the sort of equipment that disabled people might use.
The first thing she did was ask how I managed in my flat? Could I get out of / into bed? Could I get up off my chairs & toilet? Could I get into & out of my bath? Could
I use my shower?
She had of course found my Kryptonite as I struggle to get up off my settee. I struggle to get up off the toilet & I struggle to get into & out of the bath. I even owned up to a few falls in the bath that soaked the floor but didn’t hurt me.
So we contacted a local company & I get a raised toilet, a stand that helps me get off the toilet & something that raises my settee by the required 5 inches. Also miscellaneous handrails by the bath.
Most useful additions to my flat & free of charge. I also tried an electric unit that lowered me into & raised me out of the bath. This unfortunately took up too much space as I like to lie & soak in the bath.
A very satisfactory day.
Best wishes
Steve2
[/quote]
Hi again Steve2.
I am about to reply to a post from Tot, but privately - sorry!
I agree with your sentiments. And I also understand why you question what all these acronyms mean, and what is “such and such” supposed to do for me?
Without going into the full suesbestmate history, let me say that the old adages like “Nothing ventured, nothing gained” work for me.
Where I live, there is no such thing as a blue badge space except at public car parks etc. And my wife does not drive any more. Being on your own (in practical terms) is bound to be much harder for you than having a partner so all I can really say is I hope you keep it up!
Persuading Sue to be as open as you have been is difficult, and I hope that I can include her on this forum soon.
Cheers
suesbestmate
Hi Tot
Thanks for your update. For a variety of reasons, I would like to reply privately to your post. Any advice on that issue will be appreciated! As yet I am still trying to find my way around the forum, the posts, and all the options!
Thanks
suesbestmate
Hello again suesbestmate … Up to the age of 59 I had never had anything wrong with me. But then I got diagnosed with Prostate Cancer. I was out of control with worry & fear. I was given the phone numbers of various “sufferers” that had been through what I was going to have to go through. I contacted them & they were all a great help. They were very open with me & helped me a great deal so now when I can I try & help others in some small way by sharing my experiences both good & bad & boring no doubt.
So there we are Steve2. I guess that is what this forum is all about! I regret not joining this forum months, maybe even years ago. Hindsight is a wonderful thing!
Looking forward, with help from professionals and fellow sufferers, carers, friends…
Good? Yes. Bad? Yes. Boring - No.
A former work colleague of mine incessantly told everyone in the group:
“Remember! You’re Unique! Just like everyone else!”.
BTW, I have history in or near to your home town, from more than 40 years ago! Fond and sad. Exciting and tedious. All of them are important.
Keep well
suebestmate
Hello suesbestmate … You might also phone the Parkinson’s UK Parkinson’s nurses here if you need help. They are excellent.
I’ve had reason to phone three times & was helped a great deal. Sometimes they are all the help there is.
When ever you see a Neurologist make sure to book a follow up appointment 3 or 6 months down the line. Otherwise you will not get seen for months if at all.
