bemused @ primary care

There is just no "joined up healthcare"  As far as I can see there rarely is or has been.  I can go back  years or more and know that both my wife and i were chasing things up ourselves to get things done.  Some practices are better than others but generally you need to be proactive and make sure that all these things happen.  I moved house just over 2 years ago and our new GP surgery seems to be better in some ways than my old one - though once started on  my HT there things were good - though I did do a lot myself but didn't have things in my way which was good.  This new practice is really good as they tend to get a letter from a consultant and within 24 hours the receptionist rings me up to say either GP wants to see me or a new prescription is waiting for me - this has never happened before - usually I have to chase up letters and new medication from consultants so quite impressed with that.  I am currently trying to organise my "supposedly" annual consultation with urologist and PSA test.  So far I have mailed 3 different secretaries - the first two came back saying they were not at work so please contact another.  I have now e mailed the other twice and have not had a reply from her.  Next step is trying to telephone - though I know already from talking to other men at Maggies Walnut Club that if you leave a telephone message you never get a reply.  Unfortunately, the other men leave it at that and think they will get called forward whenever which generally means never.  So once i have tried to contact them by phone for a few days will write a letter straight to the top - I should have been seeing my urologist annually even though I was seeing the oncologist but have not seen the urologist for 2 years (Nov 2017 was last appointment and that was for something totally different) - I was OK with this as still getting PSA and consultation with onc but signed off from onc last January and by hook or by crook will get an appointment with urologist.  Thank goodness we are aware enough to know that we have to be proactive.  All the men from the Maggies Walnut Club have complained to the hospital - doesn't seem to have made much difference.

Thanks for the reply , for me a GP`s system /computer data base even at a basic level should be able to record when your next ? what ever is and these days be sent a text reminder on your mobile as is the norm these days , the prescription  for HT Injection should be ordered as well and the appointment for the injection sent, this is not rocket science it is a breack down of Primary Care , 

Nope.  Its not rocket science and should be managed far better than it is.   Seems soemtimes it isn't so we just have to be pro-active.  Glad I still am able to be proactive I pity older people with memory issues who have no one to look after them.  I have had to do this for both parents and elderly relatives of my wife over the past 20 years and make sure that their follow up appointments are booked etc. 

Hi

I can commiserate with your frustration.

It may help you to be aware that, as Freefaller says, the so called “NHS” is fragmented and really doesn’t exist. It is a franchise. There are a lot of separately managed and funded secondary care providers some of which are “NHS” trusts, some are private companies.

There are “NHS” groups that commission services for people living in particular geographical areas. They don’t actually provide any services. These Clinical Commissioning Groups (CCGs) arrange secondary care services but don’t commission GP services. This is either NHS England, NHS Scotland etc.

Different NHS trusts, private health providers and GP surgeries use different IT systems. Sometimes they’re joined up, sometimes not. Communication between trusts and trust and GPs is patchy.

Additionally, depending on what your health issues are you are referred to different departments within the same trust. Prostate cancer is Urology for early prostate cancer, Oncology for advanced prostate cancer, Lung problems may be another department, heart problems another, arthritis another. Communication between these departments is also patchy, better where medical records are electronic but still depend on clinicians actually reading them.

For example, I have been “under” both urology and neurology departments in my local trust.

In July a urologist ordered some CT scans, a bone scan and an MRI. The urologist wrote to me to say that there was a possible problem with my right kidney. (still urological). Nothing else was said to me.

I know my GP never received the results of any of these scans.

I asked for copies of all the scans and the reports which I got from the X ray department.

The reports stated I have bone degeneration in my feet, knees, hips and spine, a lung problem, gall stones and signs of chronic bladder neck obstruction. I was never told any of this, neither was my GP. There’s nothing I can do about the degeneration, I already have treatment for the spinal problem. I guess that the urologist has not told the orthopoedic department. The gall stones give me no symptoms so not worry. I guess the urologist has not told the gastrointestinal department. I also guess nothing’s been said to the Thoracic department. I bought a pulse oximeter (would you believe) and cannot detect any serious problems with my breathing.

I saw my GP about the bladder neck obstruction, she emailed “a” urologist, not the same one that arranged the scans. I was given an appointment for a cystoscopy. On attending for the cystoscopy, the doctor asked me why I was having a cystoscopy and had no idea I have had a prostatectomy.

One answer to all this is for the NHS to become an integrated national organisation again, with local health authorities who manage everything. I don’t think that’s going to happen however.  Still might not solve the problem.

I understand that it’s hard for normal folk to navigate all this, but I’m afraid you do have to take on board that to some extent you have to manage it yourself. In some respects we have to learn how to “use” the NHS.

One thing that might be helpful that most areas of the UK are now developing “Integrated Care Services”, usually found in the community, (not a hospital trust) mainly aimed at older people and/or with more complex problems/multiple co morbidities. Your GP surgery may know more about this where you live.

Another thing I’ve found helpful is that my GP surgery, like most in the country now, allow patients online access to their medical records. I have had this for some years and I’ve found it very helpful. I think these GP systems are in the early days of their development and perhaps as yet don’t have a process by which things can be flagged up automatically. GPs, people have to put the flags in! I suppose it might be some kind of AI thing they’d need otherwise. Dream on! I guess it would be the same in the separate hospital systems.

I think there should be a campaign to get similar access to hospital medical records online.  Legally we are allowed to access records but it's not easy or automatic.

I do largely self-manage, e.g. I’m aware of when my six monthly PSA check is due. I make an appointment myself. I get the result online and if there’s any problem do something about it.  It might be a good idea to keep your own record.

As regards contacting appropriate people in the hospital, it’s best to ring rather than write or email. If you get a voicemail or answer machine don’t rely on leaving a message and they’ll get back to you. Ring again, at different times of the day. I volunteer in a Macmillan Information and Support Centre based in a hospital and sometimes people tell me they get no answer or people don’t ring back, so I ring the appropriate people internally on their behalf. (They tend to answer internal phones more readily).

You should have been allocated a Clinical Nurse Specialist or Key Worker and it’s best to contact them. If you haven’t got one, ask for one. I believe they are only allocated to cancer patients and those with chronic issues. It will be a different one for each condition you have.

I recently rung the urology medical secretary myself to request copies of my scans. She said she’d ask the urologist and if there was a problem with this would get back to me. She didn’t get back to me and I didn’t receive any scans so I went to the hospital Patient Liaison and Advice Service (PALS).

You can’t rely on PALS to be able to do everything you want, but in this case within 24 hours it was fed back to me that I would be sent the scan reports. I got them 5 days later.

PALS are in a position to mediate between yourself and clinicians if this is necessary.