Just what are all the medical staff exactly doing? You can’t get to see anyone speak to anyone see anyone, just what are all these different consultants what are they doing 3 consultants I see and haven’t seen one since last November, and one is putting the medication up that they tuck me right down on, just what is happening doesn’t see or speak to me but put up medication that made spend £20.000 just hope I see the signs this time.
Hi @Ken2468,
I’m really sorry to hear that you haven’t been able to see any medical staff lately. Access to health services is difficult at the moment due to Covid - 19 restrictions this is particularly difficult for people like yourself and is making life more complicated. Although telephone and internet consultations are available, I definitely understand that it is not the same as speaking to someone face to face.
I can see that my colleague, @DavidGoldthorp has previously advised you on a similar concern that you expressed in June and I just want to echo what he has suggested. Please remember that we are here to help you if you’d like to raise issues with your clinic, our helpline and local adviser service can help you talk through your options and rights as a patient. Give us a call on 0808 800 0303.
As mentioned previously, better services and treatments for people with Parkinson’s is at the heart of our work, and is an integral part of our campaigns and excellence network.
You can get involved by joining our campaigns network and share your knowledge and experience to help us campaign and shape better services across the UK.
Best wishes,
Reah
Yeah they might be covid and them staff are doing a wonderful job,you can’t even get a telephone appointment, if you could they’d replace your appointment with one but I’ve had my appointment cancelled twice, I have spoken to the nurse and she’s been in Contact with him and what did they do put the medication that they had taken me right down of ( ropinirole) up, it just doesn’t make sense. It the same though out the nhs all people the treatment and they people aren’t going to doctors that’s because they tell you th phone 111.if you ask me the rest are take the pee and I bet there still taking there big salary’s. it’s not covid killing people it’s not getting any treatment.
I agree. Services have been hit hard by covid-19 but more worryingly, there is no indication of any plans to return to normal anytime soon and my fear is that Covid-19 will be used as an excuse to further reduce already depleted services with even more emphasis being put on ‘empowerment’ - in other words, DIY.
It already felt like there was a desire to encourage people with Parkinson’s to visit their GPs for support irrespective of individual GPs knowledge and understanding of Parkinson’s and also irrespective of clear evidence that people with Parkinson’s manage their condition more effectively with specialist support.
There was no obvious commitment to improving services for people with degenerative neurological conditions prior to this crisis (not considered cost-effective I suspect) so I don’t think it’s a big leap to think that the NHS will reduce such services further in order to save or implement priority services. I could be wrong but everything I read suggests that this will be services whereby suspension will lead to potential legal action and services which, if put in place, stand a chance of saving the NHS significant amounts of money in the long run.
The banner on this forum talks about access to mental health support; I feel that right now, the focus should be on access to support for basic medication management and specialist support to assess whether additional input is needed because this step comes before accessing mental health services for Parkinson’s and right now, this is not in place for too many people.
My own situation is that I was transferred to a new consultant in September last year but I have no idea if he even knows I’m on his caseload never mind about having an appointment at any point in the future. We have been able to contact the specialist nurses by phone in this area up until recently but we have now been advised to see GPs for any Parkinson’s related queries. The nurses have an absolute backlog of 100s of people who have had appointments cancelled as well as a multitude of new referrals who have had no contact at all since diagnosis. My appointment was cancelled earlier in the year but I suspect that I’m not a priority for a catch up appointment because I did speak to the nurse briefly when I had a problem during lockdown so I am now going to have to phone my GP and hope that I can get through to him even though he doesn’t know the first thing about Parkinson’s and will just advise me to increase doses of medication that I already take without understanding the implications or impact of this and without knowing whether the medication he is advising that I take will have any impact on the symptoms that I am struggling with. I have no way of speaking to the nurse even if my GP cannot answer my query because we have been advised that GPS are to phone specialist nurses if they feel they cannot support patients and so I am at the mercy of my GP’s explanation of my difficulties to my specialist nurse if I can even get through to him in the first place and if he is even willing to attempt to contact the specialist nurse on my behalf and can actually manage to get through.
I need to adjust my medication and so I am bracing myself for a lengthy and stressful experience which is already causing a great deal of anxiety. Hopefully, I will be wrong and I will be able to get support but it honestly feels like an absolutely impossible situation.
It is my understanding that the situation has been exacerbated by redeployment as well as retirement during lockdown and there is no indication as to when or if replacement staff will be appointed.
The exercise and self- help mantra is driving me mad. I can’t exercise at the moment because my medication is wrong and I can’t exercise if I can’t unknot my feet and my neck. It is no good advocating self help if people cannot get the support they need with medication and multidisciplinary support to enable them to implement behaviours which will help them to manage their individual symptoms. I do access advice sheets but they only give me generic information and most advise me to contact my specialist nurse for support if the generic advice does not help.
As I said, the whole situation feels totally impossible to manage at the moment and the future, which already didn’t look too good, seems even bleaker right now. J
I totally agree with every thing you have said but don’t expect your gp to help they will only tell you your specialist needs to change it, as you said your gp no’s very little about Parkinson. The best thing you can do is try changing how you take the medication your on. Try taking it at different time that works for you it works better for me give more time in the day but I’m not good later on.
I too have had no specialist contact for about 6 months, and as for my GP, I can get as far as the receptionist who tells me my GP’s retired, and that’s all I get.
I don’t really understand what is going on with the NHS or what the plans are in terms of reintroducing cancelled services and opening up more GP services. I can find nobody to ask and there is no information on the NHS or government websites. I don’t want anybody to be exposed to unnecessary risk and I’m not criticising frontline medical staff but I worry that this crisis will be used to reduce NHS services and make digitalisation of GP consultations the norm as a cost-cutting measure.
Everybody tells me that things are difficult due to covid-19 and I may find accessing support more challenging at the moment, which in reality is not that helpful, but while there are strong plans in place to open up schools, I cannot find any information on opening up the NHS and I have to wonder why.
A 91 year old neighbour with a grossly swollen eye which she cannot open was advised to wait for 6-months to see what happens before seeking further treatment - seriously?!
I think that I still have a GP but we will see on Monday. Worrying times all round I think.
Jx
You need to get in touch with your Parkinson’s nurse and demand to speak with the specialists it’s the only way to get anything done or look your specialist up find there phone number and ring the secretary and demand an appointment, it no good being nice with it get you no we’re, I no I’ve had to do it myself. You can’t tell me that all these doctors nurse and specialist are working on covid I’m not having it. What are they really doing because no one seems to be getting the treatment they need, I had a phone consultation couple of month ago and it just no good you need to see the person so you can explain what is happening to you and how you feel it’s just not the same on the phone it rushed and you can’t explain yourself the same. It feels like your fighting this battle alone and you can’t explain to your family because only people with Parkinson’s understand how your body feel and how your body feels the stiffness the twisting in your legs and that’s just me.
Please, please let me know how you all get on - me it is over 2 years since I saw anyone. I am now on a waiting list to see a Parkinson Nurse hmmm not knowing when I get high enough to be seen All fairness to local GP,s they are not specialist doctors and they only know so much about Parkinsons - Mine is lovely, she is so sympathetic but with the best will in the world sympathy is not what we want!!! Neurologist - hmmm did have a 3 minuet and 27 second telephone call only to be asked what meds I am on and when I take them - strange that was - he prescribed them in the first place. In the past I was told my back probs were not due to PD - later to be diagnosed as Camptocormia and my notes dead filed for several years so this isn’t a new problem at all. I could write a book about Parkinson’s and the Neurologist I have seen and not seen. I have now got the name of a new one but based an 1 - 2 hours or so away from my hospital. I am desperate to see someone as my back gets worse by the day - can’t remember when I could stand up unaided let alone straight.
Sorry I have been moaning its that there is little else you can do …
I agree with what you say about neurologists.
It must be the easiest job in the world, I’m onto my 3rd, and all they’ve ever done is ask me to recall my condition history and ask what meds I’m on, and now they do that by phone, the last time a neurologist granted me an audience was 1 and a half years ago.
You’re not moaning, you’re highlighting the reality of it all.
Hi @Eve1,
So sorry to hear that your back has been getting worse, if it continues to get worse I’d strongly recommend that you speak to your GP again. Please also feel free to take onboard the advise that I’ve given @Ken2468 on this this. I’ve made it easier to find by copy and pasting the link here: Medical staff
Don’t forget, you can always give our helpline service a call for more support your situation on 0808 800 0303.
Do take care.
Best wishes,
Reah
Hi I met with several of ‘the gang’ who go to our Parkinson gym class via Zoom as we are still waiting the go-ahead to go to the gym - better safe than sorry.a
Guess what topic came up yes neurologists. One chap moaned to change his and he has been transferred to the geriatrics clinic - it has to be a joke.
One name that came coming up as brilliant and would mean me traveling some distance. But the way I feel today, I am going to make further enquiries. Unfortunately my own GP has now gone ‘phone a patient’ think I will try and email her with all the facts and ask what she can do for me. It really is disgusting the way we are being treated - today I feel sick as my body is so bent over and acid is coming up despite my tablets for acid - they whole of my stomach muscles feel hard and I have just taken paracetemol and with it that bring other problems!!! Sorry I am going off on one - its a bad bad bad day - I have mentioned before that someone once said what was once your worst day will become your best day - doesn’t bear thinking of. And on that cheery note I will sign off.