ARE YOU A ' GOOD PATIENT '.?

[Kwenda]

Are you a good patient?

As a person already reading these pages is it only a matter of time before you notice signs of some medical condition in yourself.?

But what exactly do we do when we make an appointment to see our regular doctor about some bothersome problem that we know is not life threatening, but which rather bothers us.?

What is being a Good Patient when seeing your doctor.?

A good patient does not bring up things they had read online which worried them.

A good patient accepts the doctor’s conclusions and does not ask too many questions.

On a recent visit my doctor asked what the problem was and I replied with:-

‘Well, it’s not a big problem, but…….

And the doctor ended up agreeing with me. “It’s probably nothing,” I was told “It’ll probably go away on its own.”

I nodded and smiled as if saying ‘ I thought as much ‘ .

‘ But in my head, I was thinking, ‘It’s not sure that it really is nothing, and it might not go away.’

Next week things were worse, and I telephoned and arranged to see a different doctor at the same practice.

Later that day the doctor listened to my problem and said, “No, it’s not nothing. It’s something.”

The doctor then made arrangements for me to see a specialist and perhaps have a CAT scan.

I walked out of this doctors surgery feeling vindicated thinking that this doctor really listens..

And perhaps I lost a little bit of trust in my regular doctor.

But later when thinking about this event I began to understand that perhaps I was guilty of trying to be too much of a Good Patient. After all, my regular doctor had just listened to what I said and this was NOT THE COMPLETE TRUTH.

I said, “It’s not a big problem” when I should have said “I am worried about this.”

I said, “The pain seems to fade away,” when I should have said “ It really hurts most of the time.”

I said, “ I doubt this is important,” when I should have said “ I have read on the Health Unlocked pages that this can lead to bigger problems.”

On these Health Unlocked pages we write about new research into drugs, complicated chemo therapy options and many other things outside of our control.

But we patients often put up barriers that prevent our getting the services we need.

To be a ‘ Good Patient ‘ we have to be totally truthful and give a full explanation of why we are there. Anything else wastes the doctors time and we do ourselves no favours at all.

We must be the truthful patient. The patient who’s not afraid to say what they really think, even if that may be wrong or seem to be overreacting.

[HAIRBEAR_UK Founder Admin]

With or without barriers. getting to see a Doc/ GP or otherwise in the UK is a challenge today.. Often when you require help to treat a minor ailment or complication of CLL that would benifit from immediate support, an appointment is days away. By then we may feel totally different or the problem's escalated. So how do you become a good patient?

Yes we must learn to become more involved in our own care and self advocate for our needs and push. not be fobbed of with the paternal old school atitudes of: "oh well it;s probably nothing" but make sure our concerns are investigated and explained. Write it down if you can so when in front of the doc you can recall everything that concerns you..

Maybe Dick you could contribute to the NHS post seeking input into this?

Nick

[Kwenda]

Hi Nick,

I did read the post about experiences with the NHS A & E departments but fortunately I have no such experiences.

I have never even looked inside the doors, and thus really cannot comment.

My CLL has of course produced some side issues, but they were never of the urgent variety.

However I do agree that some doctors are so busy that to make an appointment can be for several days in advance. Luckily my doctor in the UK has just started a facility whereby one can book your own appointment online. I can now see exactly how busy the doctor is, when he would be most relaxed and have time to see me. Also he has two other doctors in the practice and thus I can in an emergency choose one of the other doctors.

I do believe that the future is a building that has several doctors all working together. Thus a saving in costs as only a single receptionist. Also perhaps some dentists within the building as well as nurses to bandage wounds, give routine flu injections and the like.

Dick

[HAIRBEAR_UK Founder Admin in reply to Kwenda]

PS deleted my post as I realised I was soap boxing.

On the subject of being a good patient well here is a good place to learn how to self advocate to ensure we don't fall through the cracks and experience the pitfalls of ignorant primary carers after all many may not see more than a few of us in their lifetime. But when we get in ftont of our specialists cover what's on your mind especially if you think it's about CLL.

I don't know if I am a good patient because most of the time I see a doc is because I feel ill or have a physical concern, therefor make sure they know why. But routine visits are a different matter it is easy to forget when you were unwell ahead of a visit. keep a diary.

I don't wish to be a good patient just a treated one, because then I am able to be a person again. . I guess what you are saying is make sure you discuss everything you feel or experience as doctors are not mind readers..

At my own medical center there are a hand full of GP's some I will now avoid. I recall someone in the group using the expression you may have to kiss a few frogs until you find the right one. for you. My current GP looks after my holistic needs and has taken the time to learn about CLL and listens to my concerns and is willing to investigate. Devloping a relationship that works has taken some time.

Thanks for raising this, I do understand being able to talk to the doc may not be easy for some, but take your point we must.

Nick

[AussieNeil Partner Administrator in reply to Kwenda]

Aren't group practices common in the UK? The medical centre I've been attending for almost 40 years has a group of doctors plus nurses plus a physiotherapist and one or two receptionists. My dentist has shared his premises with a doctor for most of that time, only recently taking on another dentist when the doctor retired. Both practices are in converted 3 bedroom homes. In Australia we've had 24x7 clinics for decades staffed by a group of doctors on roster. The latter are useful in an emergency, as you just get to see the doctor rostered on when you arrive (so no continuity of care), but they usually bulk bill our national Medicare system, so you aren't out of pocket plus the waiting time is far less than if you visited A & E. Sadly, if you attend A & E, you are often waiting among people that have overdosed themselves on recreational drugs, usually alcohol, or hurt themselves while under the influence of same.

[Myrddin in reply to Kwenda]

My GP practice already has several doctors and a variety of nurse specialists. All practices I have used have had atleast 7 doctors. So many functions that can be done by nurses are done including the annual flu jabs. An osteopath holds a clinic several times a week too. Can be difficult to see your prefered doctor especially if ther are good so popular. If you can't plan ahead but always a doctor available if needed in emergency.

The practice as well as local hospitals have had reminder text messages for up coming appointments for some time. The practice has added online bookings and cancellation recently.

All steps in the right direction. Missed appointments still cost the NHS a small fortune because people do not cancel appointments, even with reminders etc. The practice still loose 5 days worth of appointments for 1 doctor/nurse a month because of no shows.

Have had to make a few visits to A&E not cll related - these were after visiting GP - Was appauled by the large number of individuals taking up cubicles sleeping off of their excessive drinking etc.

As some of these individuals could stop breathing because of their excess they do need to be watched but it is an avoidable waste of hospital resources. Reducing the number of alcohol related A&E visits would certainly reduce the pressure significanly. Having better cover from GPs over weekends would also significantly reduce the pressure on A&E and reduce the overall cost. While the money comes out of different accounts

Good to see that hospitals are now able to share information so ct scan taken in one hospital can be viewed by consultant in another in minutes, atleast within the same Trust. A problem if you live next to the boundary of several trusts.

Certainly can't complain about the service though it did take several hours to find a bed having transfered hosptal. Saw consultant first thing in the next morning and was in theatre half an hour later. Second time went direct to the second hospital to avoid having to move later - so much along the lines of the proposal. Certainly there are advantages to going direct to the most appropriate centre whether for A&E or CLL

Certainly some hospitals are better than others just as with GP practices - so vote with your feet and make use of the ones that meet your needs

[HAIRBEAR_UK Founder Admin]

I looked into the staff at the GP practice/medical centre I am treated at and there are more than a handful of GP's supported by the same number of nurses including a nurse practitioner.

However I was shocked to see that there are more administrators than doctors!! Made up of, the same number of receptionists as doctors or nurses plus two managers.

On-line registration for advance appointments would be very helpful Dick.. There are always three receptionists at the desk when I visit but reaching a doc is hard!

[HAIRBEAR_UK Founder Admin]

This interesting article written for UK doctors – haematologists – by P Maguire & S A Johnson FRCP, FRCPath from the UK CLL Forum is designed to help them understand the challenges faced by CLL patients and how best to communicate with us, (will now source an article that helps us communicate with doctors . You may wish to pass this one on to your GP.

ukcllforum.org/downloads/85...

Communicating with CLL patients

•The doctor’s perspective

•Gathering information

•Giving information

• The patient’s perspective

•About the disease

•Elderly asymptomatic patients

• Sources of information

•About the NHS

•Patient Information

[Kwenda]

To follow up on the posting above.

My doctor has set up internet access to make appointments; you can read about this on the following web page and perhaps tell your doctor to use this system. It is useful for both making appointments as well as repeat prescriptions and just passing a message to your doctor.

patient.emisaccess.co.uk

Nick raises the point about finding a GP that recognises the importance of understanding the basics of CLL. I have had exactly that experience in dear old Helvetia. The GP in the small town is undoubtedly a good doctor, as he saved the life of my hiking friend when he had a second heart attack. However he was mightily annoyed when I chose to be seen regularly by an oncologist. He wrote stern letters DEMANDING that the oncologist hand HIS patient back to his control. He did not seem to understand that CLL requires one to get in touch with a knowledgeable expert, due to the enormous complications of the disease. Luckily for me the oncologist, Dr Taverna, was knowledgeable and attends ASH in the USA every year. My obvious choices, once diagnosed with CLL, were a good local GP, OR a knowledgeable oncologist/haematologist.

Neil, I like the sound of your local doctor/dentist/nursing practice. That has to be the way forwards. In England most doctors only appear to work Monday to Friday, and so if you have something occurring over the weekend the A & E department is your only choice. Thus we have an A & E crisis with a huge inflow of patients at weekends, and some criminally long waiting times. I feel sorry for the nurses who have to sort out the drunks and chemical over dose patients from the serious and urgent medical emergencies. There is a government move to get the doctors to provide some services at weekends.

Nick, I did hear on the TV news last evening that Wales has its own systems, apart from those in England, and that services in Wales are not as good. Perhaps we should follow in the footsteps of Chris of CLLCanada, who moved right across his country to obtain the drugs and services he knew he required.

Another contributor to these pages advised me privately that he transferred from his ‘ local’ hospital to another one 100 miles away as he was dissatisfied with the services at his local hospital.

Voting with our feet is often the best way to show the politicians what is important, and to get the services we know we need after reading these pages.

Dick

[HAIRBEAR_UK Founder Admin]

Hi Dick, on-line clinical support and care in the community is I believe on the cards for many as strapped services see the benifit of out reach programmes that connect the patient with more immediate feedback and medical resources to support their needs and reduce the log Jam.

Bart's are launching a pilot next month that will reach out to the CLL community and link them to their medical team enabling some management in the community with secure direct access to their clinical team and support on-line. this kind of hub also then can link the patient/user to reliable sources of patient information and gain access to support and on-line communities such as ours.

I believe services like this and the above you have provided are the future,.

Yes the welsh system is a little different but faces the same challenges.

I am very happy with my own local facilities now I have a good relationship with a GP who looks after my holistic needs. This took a while for me to develop as a patient and time to connect with the most suitable to meet my needs. I don't think moving to England will improve on access time. The NHS has saved my life three times in the last three years and continues to provide an excellent service if overstretched. I was reading a recent article that is discussing the percentage of primary carers who are experiencing burn out, that is alarming and is a UK national problem.

Out of hours access to general practitioners or triage would reduce some of the log jam further I agree. It is not a problem of England alone, two months ago when ambulanced to my local hospital I sat in the back of the ambulance outside A&E for two hours with six other ambulances with patients in all awaiting triage and access to the building. how many were left awaiting ambulances? A &E was full of minor presentations because there was no where else to go for them and people are only human. they will seek help where they can get it they need it,.

Incidentally I am only ten minutes away from a leading world CLL research team and treatment center, so won on the post code lottery, where CLL management and treatment is concerned, Wales does not have a special drugs fund so this presents additional challenges to access drug, But I believe the English fund is planned to go in 2014 too so there may no benifit to me crossing the boarder to gain access to drug, I trust my treating clinician and he is best placed to gain access to what is needed.

NICE recommendations are implemented differently and at different rates by local NHS trusts but do apply to England and Wales, We will have to continue to keep raising the profile of CLL patients here and lift the unmet needs of our community into the focus of our own NHS service in Wales too.

Nick,

[HAIRBEAR_UK Founder Admin]

Following on from above here are a few interesting links to information to aid you to gain the most of your appointments with your doctor .

UK : NHS Choices

Get the most from a doctor's appointment.

General advice on how to prepare for a doctor's appointment and what questions to ask

nhs.uk/Planners/Yourhealth/...

Questions to ask the doctor

nhs.uk/NHSEngland/AboutNHSs... interesting information videos

From US sources:

NIH Senior health - Talking With Your Doctor

nihseniorhealth.gov/talking...

NIH - Talking With Your Doctor: A Guide for Older People

nia.nih.gov/health/publicat...

NIH - talking with your doctor

nlm.nih.gov/medlineplus/tal...

[HAIRBEAR_UK Founder Admin]

While following up the above question about on-line resources in Wales

I was pleased to find my local GP practice and medical centre has linked into the NHS Wales online facility this now lets me to do the following on-line:

Book and cancel appointments

Request repeat prescriptions

Update personal information

This will improve my access

myhealthonline-inps.wales.n... This facility will I am sure be the secure portal used to access additional interactive on-line care in the community resources as they come on-line in the future and are added to the platform .

[Kwenda]

Nick, earlier in this forum thread you wrote :-

‘However I was shocked to see that there are more administrators than doctors!! Made up of, the same number of receptionists as doctors or nurses plus two managers.’

Now you say you are able to ‘ Book and cancel appointments, Request repeat prescriptions, Update personal information’ . Thus you will be doing some of the work previously done by the receptionists.

I wonder if this means that your clinic will shortly be reducing some admin staff………………..????

Regrettably the NHS does seem sometimes to have a ‘box-ticking’ approach, which means of course lots of admin staff to tick these boxes….

Dick

[HAIRBEAR_UK Founder Admin]

I was in the waiting room for an hour today and never saw five have the chance to come up for air in the time I was there. they were doing a lot more than just ticking boxes. I think more Doctors not less support staff at our medical center are what's required..