No support

LK57

I realise this is the second post with a similar theme but I too am feeling totally unsupported.

I was placed on the "urgent" list for a total hip replacement nearly 8 months ago but have heard nothing since. When I saw the surgeon, my physio appointments ended. I've got considerably worse since the surgeon's appointment and now can hardly walk at all. I've tried to make a GP appointment but could only see the nurse who said they'd find out the likely operation date and make me a referral back for physio but after a month and three repeat phone calls for an update, I'm still none the wiser and don't have my physio appointment. Even getting a supply of naproxen (which was prescribed for me by my gp without seeing me) is proving almost impossible as every time I ask for it, they seem to manage to lose the request! I'm now so fed up with being in constant pain, not being able to walk and on several occasions have had my hip "lock" and as I live alone, I've been left crying in pain for up to 20 minutes before I can move again.

I'm usually such a positive person but this has now got me down to the point where I wonder whether this is all worth it. How on earth do you get help when you need it?

Bettyboo22

Oh @LK57 - I'm sorry you are having a really tough time, this sounds tough!

I would suggest you speak to PALS - What is PALS (Patient Advice and Liaison Service)? - NHS (www.nhs.uk) or ring the surgery and ask to speak to someone to make a complaint. The waiting lists are horrendous currently but to be given no other support (physio/painkillers) whilst you are waiting isn't acceptable, despite hearing of case like your far too often.

Also whilst you waiting for further physio maybe you'd be interested in the Let's Move for Surgery Toolkit | Versus Arthritis, there are some exercises for pre and post surgery.

Really hope you can get some support, please try and stay positive as it will help with your recovery.

Best wishes

Baloo

@LK57 I feel for folks who seem to have nowhere to turn. There may be something you can do, usually there is, but in the broader picture it may be time to see your local MP about waiting too long or something. I notice several fairly positive posts about seeing your MP which might at least make you feel a bit better. MP's have the enviable job of debating about seeming impossible situations.

stickywicket

I'm sorry you've come to need the NHS so badly at a time when it's in such a desperate state itself. You have realised that we must do our own medical admin these days and that's good but it doesn't seem to be helping much.

Re the naproxen - my guess would be that it was never put on your repeat prescription list. Usually, when we're given a new med, they wait before doing so to check its efficacy. I suggest you ring to check. (Pick a less busy time. Monday mornings are always very busy.)

Do check out the exercises on here. They're very good and, as far as I'm concerned, all we need is to be given the right exercises. The rest is up to us ie to do them. I don't think physios do much more now. About 40 years ago I recall being given heat treatment, electrodes on my feet (yup😉) hydrotherapy, and other stuff but, really, I think it was the exercises that helped. It's always nice to know how well it's going but we can, to as large extent, gauge that for ourselves. Before my husband's THRs he bought an exercise bike. he's not a cyclist and hated every minute but he got fro just 3 minutes daily up to 3 x 20 minute sessions daily. This kept his muscles strong for recovery.

As @Bettyboo22 has suggested, you can also try PALS. And, don't forget, we will support you too😀

LK57

Thank you to everyone who's responded. I do have an exercise bike but can't now get on it as it requires me to lift my leg beyond it's current capacity to move but maybe I'll try again. I'm in my office today (I do work from home whenever I can) but the pain is particularly bad today so I'm standing up all the time as I can't face the hip lock which happens whenever I sit down. i have to go to two meetings later this evening which is clearly going to be fun (not). I may well still be in the meeting room in the morning!

TLee

I think you're on the right track if you are determined to keep moving. I have severe OA in my left hip and have yet to hear anyone suggest surgery (shots didn't help, PT did about as much as they could, and the only pain med I've been offered is Tylenol). I was becoming VERY angry and frustrated. For the past few months I have been walking more and I feel much better most of the time. I do seize up occasionally, and have some scream-out-loud pain moments when I step down or turn wrong--yikes!. I find that if I can push through (without falling down) things seem to realign and I can move better.

Trish9556

Hi @LK57

One of the GPs at my surgery told me to get used to living with my pain fir the rest of my life as I have Osteoarthritis and there was nothing she could do when I was sobbing down the phone to her.

I phoned and left a message for my physio who phoned me back at the first opportunity on her next working day as was horrified. I appreciate that GPs are under immense pressure but the way we have both been treated is disgusting.

If you know the surgeons name, phone his secretary and have a friendly chat with her. She will be able to find out what is happening. With the exercise bike, try using a childs toilet step or one of those cheap folding steps you can get in different heights. I have my exercise bike at its lowest and find one if those helps when I can't get on my bike.

Love n hugs

Trish xx

veryaraf

The trouble is GP’s are private companies these days. I had to see mine last Friday afternoon after my knees went. Fast response etc but needed to use the disabled WC afterwards as I get anxious. It is an old green thing and so low you wouldn’t believe it. I use a wheelchair to. Anyway I went and offered them £40 to buy a raised seat . We have disabled shops in our High Street. They turned me down and I had to email and go through the motions. Anyway success, they agreed to my request. Sometimes you have to be pushy. I could cry all day but take cbd tabs to take the edge of it but they do thin the blood so you need to check first. I am going to try a company called Good Life Sorted soon to fill in the gaps in my life. Some things are generation related. We try to smile and carry on. I do feel that the occupation therapists should have a higher profile. They have to be recommended by gp and and take a few months for an appointment but they visit the home and can see where the weaknesses are. Worth a try. Just rambling now so will shut up.

LK57

So, called into the GP surgery today as I had yet another prescription to collect from the next door pharmacy. Was told (a) it was my responsibility to call the hospital to check when I might get my operation or to request it be expedited and (b) the physio is booked to the end of August and I'm no. 43 on the waiting list.

I have no words

veryaraf

GP’s can be a nightmare. I went last week after my knees went. Did usual tests bp, heart etc and said I had a leaky heart valve and needed an X-ray. After coming home I decided to cancel any X-rays as I have had the leak for over 10 years and it wasn’t why I went. They will skirt around the pain issue like nobodies business as it’s not ‘their’ main priority. So as I mostly communicate with my gp by email I sat here and wrote him an email explains my reasons for turning the X-ray down, etc, etc. Actually he can be understanding if you press hard enough and he now understands my priorities and where my head is, which isn’t in a medical journal. They don’t get that one solution doesn’t fit all. Sorry about the rant but it can feel that you are climbing a wall and never reaching the top. So I have new pain patches and a cancelled heart check and a part of me is more relaxed.

LK57

I phoned the hospital and was told there are no operations currently as the surgeon is on sick leave. I was told my "urgent" operation is "not going to be before Christmas" so at least a 15 month wait for urgent surgery. Non urgent is upwards of 2 years waiting.

Bettyboo22

I'm so sorry to hear this @LK57, so disheartening. The NHS is in a right mess, the waiting times are getting longer not shorter 😢

LK57

Just as an update have tried again to make a gp appointment. Their phone message says you have to fill a form in online but online is says that my surgery doesn't accept online appointments. Tried again to call the surgery and the receptionist said no appointments with a gp but managed to find me a cancellation for the physio at the end of next month.

veryaraf

It is sad and so varied. Depends solely on the practice. My gp emails me as and when and when I email him I get a fairly quick reply. If he is on holiday as he is this week, the dr dealing with my blood results rings me. I have had phone calls during the even at 7. 30 ish have had appointments same day as emailing. I must be very thankful.

Trish9556

Hi @LK57

Last time I tried to get an appointment I was met by new messages that

A. Told me I must download a new app to make an appointment press ...

B. If I didn't have the app to download from ...

C. If I didn't have a smart phone to press ...

Nothing told me how to speak to a human being but after three attempts pressed the option c where I was informed there were no appointments and no bookable appointments for face to face after waiting 40 minutes.

I currently use patient access and the NHS app and don't see why I should download a third app for my surgery to be interrogated by an AI before I could get an appointment. I emailed the surgery to ask when I could book appointments via patient access or the NHS app as I didn't want to put my details into a third party app. That was over a month ago and I've had no reply. I give up with them.

Love n hugs

Trish xx

Buzz10

https://community.versusarthritis.org/discussion/60433/no-support

Hope you manage to get the support you need.

I see someone mentioned the 'PALS' i have today just got in touch with my local one, i have no reviews on if it will work but defintley worth a shot. I have also contacted my local MP about the service being received for people suffering with arthritis.

Lilymary

I'm sorry to hear everyone's dreadful experiences with their GPs and the NHS generally. When the system works it's brilliant, but when it fails.....

I gave up with NHS physios years ago. They can't make them available at the times when you actually need them, and the number of consultations they let you have is limited, so they may end when you still actually need treatment. Private physios are MUCH more flexible, and not all that expensive as these things go. Do look into it. You can see them as often as you need, when you need, and they'll reassess you and modify your exercises or treatment each time.

The main thing is to keep the "exercises" going as best you can. Before my THR I would have thrown something at people telling me to exercise, as it was far too painful, but just keeping moving and doing exercises to build up the muscles that support your hip is so important, as @stickywicket says. My job is quite active, so that kept me mobile, with the aid of a stick and a lot of drugs, even if it took me ages (ie days) to recover from a really busy day. If you're self employed and work from home there's a real temptation to just sit still all day, there's no walking to and from the office, round the office, going out to buy a sandwich etc, and that really doesn't help. Try to set your phone alerts to get you out of your chair for a few minutes every half hour, and once or twice a day do some gentle exercise (build it up if you can). I found the "Let's move with Leon" exercises quite fun and not too challenging, and also tried to do the exercises recommended on this link, which to be honest is pretty much all the physio would guide you through anyway. (the easier exercises are towards the end). While the irony can be that your joint deteriorates faster than your muscles build up, so you don't feel you're getting anywhere, every little really does help, and may tip the balance.

https://www.versusarthritis.org/about-arthritis/exercising-with-arthritis/exercises-for-healthy-joints/exercises-for-the-hips/

Shazznay

https://community.versusarthritis.org/discussion/comment/709830#Comment_709830

https://community.versusarthritis.org/discussion/comment/709830#Comment_709830

I have found PALS very helpful. They have always managed to find out more information for me. Thanks to them I found out that the surgeon who put me on his list last September no longer worked at the hospital anymore. Immediately after that I was given an appointment with another surgeon in April. He put me on his list and I am having THR tomorrow. It’s taken 72 weeks since I was first referred to get here.

Poppyjane

Hello @Shazznay welcome to the online community

Apologies for muscling in your thread @LK57 .

It is good to hear that PALS were helpful and were able to find out more information for you @Shazznay .

We hope everything goes smoothly tomorrow with your THR . As many of us who have had a similar operation will say do try to do the exercises as soon as you feel able. Be gentle with yourself your muscles will have to learn to work again in a different way after such a long time , be patient with yourself.As you will see from some of the posts members have sent after similar operations that one's moods as well as pain levels and expectations are all over the place for a while.

When you feel up to it look at the attachment @Lilymary sent for exercises.

Meanwhile we wish you all the best for tomorrow.

Poppyjane ( Moderator)

Buzz10

https://community.versusarthritis.org/discussion/comment/709883#Comment_709883

I have just had word from PALS and they have passed on my case to the rheumatology service manager, so hopefully this will get me somewhere.

I am glad you have had a response, and good luck for your surgery. Will keep everything crossed it is successful for you :)

LK57

So, after months of trying to get support and at the very least a referral back to physio, I've now managed both a chat with a doctor (OK not an actual physical appointment but a phone chat) and a visit to the physio after literally standing in the doctors reception and begging. Turns out my sciatica is a slipped disk! In a way this is encouraging as I thought it was a further deterioration of my hip. It's taken nearly two months to get to this point.