Hi all… this is my first post. My husband has Parkinson’s and during the first 12 years of his Parkinson’s he has been very independent. Now that his is in stage 4 of the disease, I’m stepping in more and more. He has a great neurology consultant and Parkinson’s nurse. However, his GP practice, which changed leadership a few years ago has gone from bad to worse… just went we need a good GP.
Over xmas, he got a terrible chest infection which really set him back and a leg ulcer. His GP no longer has a wound clinic for dressing wounds and it’s near impossible to get an appointment with the nurse so I learnt how to dress the wound. It’s also incredibly hard to get an appointment with a GP… I’m tech savvy and have managed to use the app however… but you can’t book appointments in advance at all.
We had a letter - which also was sent to the GP - that the doctor at the hospital recommended a number of interventions and further tests be done at the practice to address what they suspect is a low grade infection. I followed up and just got a run around. I was told that it wasn’t urgent and that they weren’t prioritizing non-urgent appointments last week. The next day, I approached them again using the app and I asked that they ring my number as my husband now finds it difficult to answer the phone. Of course, they rang my husband! I found out and then rang them straight back and then I was told the GP would ring but they didn’t and then I did find out they closed the case. After work, I went into the surgery to explain and to try to speak to a GP to get things going and the receptionist just stonewalled me and was very patronising.
The next day, I went in at 7:30 and waited and the practice manager said I should go home and use the app. I said that I needed to make an appointment there and then as it was urgent. He then made a request for me to speak to a GP but he was very rude and asked why my husband didn’t answer the phone. I tried to explain but he was so rude.
I finally got to speak to the GP who was very kind and helpful and she immediately instructed the district nurse to come and do some more tests. The district nurse came the next day which was good. She also did speak to the practice manager about why we hadn’t been given an appointment.
I feel somewhat relieved but I’m also still stressed - it just feels like in order to get your loved one seen to properly it’s a big ordeal and you have to constantly be checking and looking and making sure that the people who are meant to help will help. I also don’t understand how a GP practice can make it so difficult and impossible to get help!
Anyway, just wanted to come and have a rant - it really feels like this is a campaign that Carers UK along with other charities should take up. What must be happening to those people who have long-term, chronic conditions but who don’t have someone in their corner to advocate for them>
Hey @mscoachbeth, you are not alone in getting help from GPS. I had appointment last week and was forgotten about until I got home but couldn’t answer them driving. Still suffering from the issues. The biggest problem is having a practice managers looking after more than one practice which is silly if they can’t look after 1 let alone more. They should not have closed your husband case, you should have complained to the local health board, same for wound dressing that is normal a nurses job than yours. Unless you know what you are doing but even then it best to call someone in. If you get anymore trouble complain to someone even if it to his parkinson nurses as they will get you some help.
One thing a lot of people working in a surgery should go on every 6 months is a communication course.
Go practices are supposed to have special policies for carers. I’m so tired tonight can’t remember where to find them. Hopefully one of the mods can do a link?
Can relate. Lack of communication in the NHS is appalling at times. All I can do is send cyber hugs.
I agree with Michael it may well be worth complaining to the Parkinson Nurse or Consultant ideally in writing sent recorded delivery. It is also worth asking his Surgery to note that YOU are allowed to deal with his medical appointments due to his illness and that they must go through you. I agree it is mega stressful. I do think the Practice Manager behaved dreadfully and no way should you have to get there at 7.30 to speak to someone.
My husband was discharged by the District Nurses partially due to his non compliance and I have been left to deal with his pressure sores. Thankfully the Cavillon sticks are working plus he has very few baths now so it is under control but the lack of support from the NHS for a medically non compliant 84 year old is very scary . I feel the more I do, the more I am expected to do and I am not medically trained. In fairness, his Surgery is generally ok and I can usually get to speak to someone the same day if necessary.
Welcome
It is hugely difficult to battle with phones, managers, receptionists, econsults, rather than being supported to have the help needed. When the professionals come they are mostly v kind. I hope we can get a system that works.
I and my husband could be wearing full knights outfit all the time, the amount of battles we have fought. I hope you have a good shield .
Warmly Ula
Thanks everyone. It’s so helpful to know that I’m not the only one in this situation - it sometimes feels so isolating when it’s you standing in front of a reception desk, trying to have a rational discussion with a receptionist but then being driven to frustration with a load of mute patients watching you in the waiting room!
I decided that I will try to follow up directly with the kind GP to ask for a follow up appointment that we can arrange in advance (remember the days when this didn’t feel like you were being awkward in asking for this, when it was normal to be able to book an appointment in advance?) - there is an email address that I know the surgery monitors and responses to - they also log every email I send on his record so even if I don’t get a response, at least I know my email will be logged on his permanent NHS record and I will then ask the Parkinson’s nurse for support.
I’ve now done some more homework, cannot find the article I wanted, now discontinued, but found something else relevant. If you go to England.nhs.uk then search for “Supporting carers in general practice:a framework of quality markers” you can find out what they are supposed to be doing. Written in 2019 in conjunction with Carers UK and the Carers Trust.
It details what should be happening, what actually happens in my practice is very different, and I suspect it is in yours too!?
(Maybe someone can do a link).
I would like to suggest to CUK that it’s time this work was revisited in some way.
Hi @mscoachbeth - Hubby was diagnosed with PD in 2015 although looking back we reckon it actually started in 2010. He has always had good PD consultants and nurses, but his last GP surgery was just awful, and everything relating to Hubby’s care was always a struggle with them. So much so that I used to dread it whenever the meds got changed because of their attitudes. Isn’t that dreadful, meds supposed to be better options yet there I was wishing they hadn’t changed
We moved house and had to choose a new GP’s and it has made such a difference, not least because one of the Dr’s has a parent with PD and as a result is so good with Hubby when he see’s him. Receptionists are also very good and when I’ve needed to talk to them in person, they always offer a discrete room so I’m not having to discuss things in front of waiting patients. Getting an appointment is still a faff though as can’t book in advance, but they do offer Hubby telephone consults which have been OK and they have a great relationship with our local small pharmacy. Also the PD nurses have been very supportive. Things are still difficult in many ways, but the surgery is at least doing what it can to help things along.
Does your surgery recognise your status as your Husband’s carer? If you haven’t already, you could have him submit a letter confirming that he consents to them discussing his medical needs with you and that any phone contact is via your number. You might need to remind them that they have the letter, keep a photo of it on your phone if you have to, to bring out with a flourish the next time a receptionist tries to stonewall you (as I often did with the old GP’s).
Would it be an option to change GP’s? Maybe some local research might uncover a surgery where PD patients feel welcomed and cred for? Your PD nurses might be good source of info.
Thanks so much - yes it is definitely an option to change GPs and I’m looking into it… I was just hoping that things might change now that I found a good GP at the surgery… But I think that it might be the best thing to do now! I find it really stressfulthough…!
Finding that good GP is a start, but I think it’s more about having the whole network on the same page and invested in providing the right care. Hubby’s GP is wonderfully supportive, but can’t change any of his PD medications. His consultant is also wonderful, and the apo-morphine nurses have been abso-bloody-lutely amazing, but their treatment plans depend on other people/departments to make them a reality.
Things looked really bleak a while ago, but we now have a care team who we feel are all pulling together and it has made a big difference. I hope you are able to find a good alternative too.
SUCCESS! Basically, I wrote a very ‘suck up email’ to hubbie’s GP surgery - saying how much I appreciated the GP support I received and how I wanted to build our relationship with them blah blah blah.
And I got a call - this lovely young GP is going to come out and see Dave next week for a home visit and will be a prime contact for us whom we can see regularly and I’m SO RELIEVED! But it took alot of persistence and strategic thinking to get there.
No, it shouldn’t be the case that what is a pretty basic right (accessing healthcare services) is made so difficult by red tape. Good on you for persevering.
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