Values, Hopes, Ambitions of the HSE in Ireland. 2015-2017

Yesterday forms that my consultant filled out to ask that myself and twin go to the UK were acceptable.  Today they are NOT.

He has to fill out a whole new set of forms for the 'overseas treatment purchase fund' , the E112 forms that allow Ann and I travel abroad for treatment.

Did my consultant know this...NO!
Did we know this...NO!
Did my TD know this....probably (he's FG)
Did the media know this...NO!

Do I know what the changes are ...NO!
Does my consultant know...NO!
Does my TD know...I don't know
Does my GP know...I don't know
Does the media know...I don't know.

Who knows?

It seems only the E112 office.
Changing the goalposts is for one purpose only - saving money.

The rhetoric of this government and the HSE stinks...

The Director General of the HSE, Tony O'Brien, presented the Corporate Plan for 2015-2017. He declared these as 'ambitions' for our services ('Health Matters'; Summer 2015). So health 'matters' to Tony O'Brien. 



here are the 'Ambitions'.

You could weep, I do weep,,, look at it!  Care, Compassion, Trust and Learning. Is this a sick joke? do they truly believe WE believe this guff?

So much care in the HSE that they refused two seriously ill, disabled 62 year olds, with rare neuro-muscular disease decent wheelchairs. That they refused one of them a bath lift, leg risers for her sofa... and so on.

So much compassion that they refuse to dialogue, visit, talk with same two older women. They run rough-shod over policies, denying and interfering when they are not allowed to do so. calling the older sisters 'serial complainers' , when all they do is ask for the care and compassion they are entitled to.

So much trust and confidence that the sisters have they want 'out' of this country, want to commit suicide, want to take the HSE to the highest courts. So much trust and confidence that both have panic attacks on receiving letters with the HSE franking stamp on it. Who handle it as if it is contaminated with ebola!

So much learning is undertaken the local occupational therapists don't know how to properly assess for powered wheelchair and seating for neuro-degenerative disease.  So much learning that consultants don't know anything about rare diseases. So much learning that consultants don't appear to know what a 'care' plan is!

"We will try to live our values every day...."

Dear Director General,

How pleased I was to read of the ambitions of the HSE for 2015-2017. Sadly I can give you evidence that the HSE has breached these 'ambitions' spectacularly in the case of Dr Margaret Kennedy PhD and her twin Ann Kennedy, of Greystones, Co Wicklow.

It is urgent that you instigate a public, independent inquiry into the 'care, compassion, trust and learning' that has been the experience of these twins for over 5 years in Co Wicklow.

Your 'Ambitions' are a mirage, a vision, or hallucination more likely. Drafted on paper worthy of better plans.

You do yourself no favours by writing 'Ambitions' that are truly never intended for operational implementation.

We are willing and waiting to meet you to discuss our experience of Co Wicklow's HSE 'ambitions' for us. The 'values' are breached almost on a daily basis.

Yours Sincerely

Dr Margaret Kennedy PhD    & Ann Kennedy


Will he meet us...probably not.


Where does this leave us...up a river without a paddle. Sure as eggs is eggs, the HSE has no 'Ambitions' for the Kennedy twins, let alone a paddle.

testing for rare disease in Newcastle UK

 

 

HSE trying to take wheelchair off one twin

 

 

 

When the news is not 'sexy' ; is not tragedy 'porn'.

A conversation with an Irish times journalist recently confirmed what I also knew.  'News' has to be exciting, traumatic, disastrous or downright scandalous if it is to be printed. Such news is a 'seller'. The term used is 'sexy' or 'Porn'.  Poverty porn, vulnerability porn,  disability porn, elderly porn, political porn...in other words the new 'porn' has become the titillation required in our newspapers.

So the older person or learning disabled person abused in a home, the young child damaged at birth by medical blunders, euthanasia debates over elderly , sick, dying, homeless people dying , This is grist to the mill...it stirs people, it enrages, it titillates in a different way.  It strikes the heart of those of us who care. and I do care, about all of this. These are worthy stories which need to be reported.

They are what 'sells' newspapers. Big murders, scandal, skulduddery, people in high places unmasked, and so on.  the voyeuristic new 'porn' sells.

So the daily drudgery of ordinary individuals whose lives are decimated by a failing health system, failing care system, failing support system does not draw the heart in quite the same way as a child dying, a young person loosing their legs (particularly if in an heroic act or utter tragedy), or a murder of an older person by their son, or terrorist or vagabond!

The ordinary daily decimated life is not 'porn' enough. it does not sell.

Another thing which does not sell...is any criticism of the 'system' that newspaper owners rely on. Politics has invaded journalism like never before. journalists seem unable to be 'pure in heart'. They write what will sell, Not what will change or improve the system.

There are exceptions of course, there are journalists who have their slot and use it well. Beatrix Campbell, Julie Bindal, Carl O'Brien, Finton O'Toole, come to mind.  The greatest of all in Ireland were Veronica Guerin and Mary Raftery. Both now deceased. Cut down in their prime.

I know Mary Raftery would have highlighted mine and my twin's plight. She would have 'heard', she would have reported it.  She had integrity, she had 'soul', she cared. I knew her...she knew me...I miss her...she was NOT into 'sexy' or 'porn' journalism, she was into truth.

But no newspaper wants the story of the daily trudge of the Kennedy Twins lives as two elderly people with an obscure unknown rare disease, whose lives have been tormented by HSE officials who rather than helping have created further suffering,

Looking at how and why we have been reported over the last few years is interesting.  It has been 1) if we holler outside the Dail with catchy visuals like pink bowler hats or red scissors...this is 'sexy'!  innovative, new, interesting even eccentric.  especially if a 'notable' endorses us in some way.

2) as vibrant, brave, independent twins with rare disease but battling on regardless.

3) if a disaster happens such as wheels falling off a HSE wheelchair...

These are all in the category of 'porn'. All 'sexy'.

But over ten years of struggle to get a diagnosis; of an Irish health system ignoring rare diseases, putting up barriers, not caring, and just...well...treating us (and many others we know with rare diseases) with utter contempt is not 'porn' or 'sexy'.

The fight for a decent wheelchair off the HSE is not 'porn' or 'sexy'.  It WOULD be if we were 5 years old with an horrific disease or physical disability...certainly too, if pretty, with pink ribbons in our little pig tails. This is the 'aw' factor that sells. Not pictures of the 63 year old wrinklies from Greystones, Co Wicklow.

It never is a NATIONAL concern, never reported in the NATIONAL press...I mean, come on...wheelchairs are NOT 'sexy' !  No-one wants to know if I can get from A-B in safety or comfort. Or indeed, get from A-B at all!

this is not 'self-pity' writing here, this is reality. This is how the media works.

The fact older twins with a rare disease are being daily 'neglected' by the HSE services; mostly the managers, intent on not spending money. Not generally the front line workers who try to be kind but have their hands tied.

The fact disabled and ill twins have no-where to turn to get our story heard doesn't 'grab' the journalistic 'porn' industry. The industry of 'sound-bites' not marathons!

The fact those in residential care have HIQA to fight for them but those in community care, living in their own homes have no-one, doesn't seem to be 'sexy' either!

This is all boring Margaret, Boring, Not the 'porn' we need.

So what are twins who languish in an Ireland that largely has ignored the suffering of elderly, ill, disabled, person living at home in their own community...we carry on creating new ways of getting the story out. Trying not to fall into 'porn' or 'sexy' sound-bites which we abhor. Yet being catchy enough to raise interest.

We do-not give up.  We seek to improve the lives of all in our 'boat of despair' .  We fight for all.

The daily toil of many disabled and ill elderly DESERVE to be heard.

                  NO we don't give up easily...even in torrential rain.


Check our facebook pages : 
Wheelchair Rights Ireland and Victims of the HSE-Unite







 

Stations of the Cross for Caring people

Jesus is condemned to death

Let us take a few moments to think about and pray for all those condemned to death in prisons worldwide. Many are innocent, killed by brutal regimes. Other deemed justifiably condemned in democratic ‘civilised’ countries. May capital punishment be banned in all countries.

No one deserves to die. And we need to save every person…because this is what LOVE does.

We also think of those we ‘condemn’ because we are prejudiced against them, gay, lesbian, transgender people, Muslims, Jews, Disabled people, homeless alcoholics, prostitutes,travellers, gypsies, refugees…Do we condemn these too…do we often abuse them, slander them, disrespect them, blame them unjustly, scapegoat, ridicule, lash with our words, our beliefs?  This is NOT love.  We are called to…LOVE.

Jesus carries his cross

We think about all those who have simply too much to bear. Those reaching suicide, those thinking about suicide. Those in debt, bills to pay but no money to pay them. Those about to be made homeless through no fault of their own. Those who have lost a dearly beloved, those who are lonely or afraid. May they have SOMEONE who cares about the. May they live…may we have the ear to hear them, help them.

Jesus falls the first time

We think about those whose life’s burden has made them ‘fall’…into drug addiction, stealing, violence…their hearts are beaten into stone by suffering. They simply care no more. May they find SOMEONE who can help them see a different way….may WE catch them as they fall, BEFORE they fall…

Jesus meets his afflicted mother

We think about mothers torn apart by war, by poverty, by the loss of their daughters and sons. Whose lives are ruined by rape, torture, killing or sexual abuse/assault. Women and girls targeted due to gender alone. May they find COMFORT from a trusting person…who can heal the pain.

Simon of Cyrene helps Jesus carry his cross

We think of all the aid organisations throughout the world, willing and ready to help the fallen in war, hurricanes, floods, earthquakes, and other disasters. We think about those who picked up bodies and body parts after the German air crash. People who witness unspeakable horror yet do their work without seeking honour or praise…and in doing so heal a little part of others suffering. May they find SUPPORT during and after what they’re going through.

Veronica wipes the face of Jesus.

May we too wipe the face of suffering.  Especially the face of children and adults who have been sexually abused, used in pornography, defiled, debased and left. May we always be there for them, ready to wipe the tears, and a listening ear. May these victims find the COURAGE to speak…

We wipe the faces of all those who lost loved ones in the German aircrash. Such a terrible, deliberate, loss…unspeakable, unfathomable, unbelievable…

Sometimes tears last forever and need to be wiped away at several points. Never forget anniversaries, never forget the horror…are we really ready to HEAR AGAIN the story and the grief?

Jesus falls the second time

The world is sometimes a very bad place for some fragile souls. Not once do they fall, but twice. The alcoholic who swore he/she would never again drink. The drug addict clean for 8 years starts again… may they find STRENGTH to try once more…just once more…and more again. Never condemn, never lose hope…may we always Love…

 Jesus meets the women of Jerusalem

We think today especially of prostitutes, women of the night. Reviled as sinful, debauched and wicked. We think of women trafficked from eastern countries so men can have their way and destroy lives for money. None of these women are sinful, wicked or whatever we may think…these are women who are vulnerable, trapped by men who harm them. 

May MEN be the ones to stop this evil trade in women. MEN who say this is simply not right. MEN who speak up for women in the night…MEN who respect women…treat them as EQUAL…worthy of integrity of body and soul..

Jesus falls a third time.

When the load is heavy, you fall…it just cannot be lifted any more. We think of all very weary people, men women and children…with loads TOO HEAVY for them. Can we hear them crying out for help. We think especially of the homeless men and women who have been on the streets for years. Can they ever ‘get up’? and if they can’t can we love them where they are…and help?

 Jesus is stripped of his clothes.

When there is nothing left and we are stripped of everything…when we are laid bare in shame…laughed at…blamed…when friends and family are gone in the other direction…what is left?  Who is left?  Others perhaps, who see the humiliation and wrap clothes of love around us. Will they ensure humiliation can be overcome…lived through…triumphed over…yes it can…with help

Jesus is nailed to the cross.

We think of all those people who today are in intensive care. Many unconscious. Many barely alive. Loved ones sitting, standing, by the bed…in the corridors…in the garden weeping or smoking…waiting…waiting…some will live…but maybe disabled or suffering…others will flourish

others will die…

Jesus dies on the cross

And for those who die there will be much wailing and roaring and lamenting. Much pain and suffering of those left behind. Left with the loss.

We think of all those who have lost loved ones, husbands, wives, parents, brothers, sisters, children, neighbours, friends…and beloved pets (yes these too). May we walk beside them doing no more than BEING there for them.

 Jesus is taken down from the cross.

After the death, after the storms, after the wars, after the pain…after the murder…after the murder trial …there is silence…a great deep SILENCE.

May we today think of Elaine O’Hara…brutally murdered…savagely tortured in mind, body and spirit. May we never forget a wounded soul was preyed upon. Like so many other wounded souls. May she rest in peace.

We think also of her family and all those left in stunned shock after this terrible evil.  May they too find peace.

Jesus is laid in the tomb.

There comes a time when loved ones must be buried. Not forgotten, but no more with us.  There comes a time when hurts and betrayals must be buried, not forgotten, but no longer with us…there comes a time when ambitions and hopes have to be buried, not forgotten…but no longer with us…because a NEW life beckons, a DIFFERENT life beckons. New paths to be trod…new ground to plough. NEW.

Jesus rises from the dead

NEW LIFE…new homes, new children, new job, new country, new hopes, new dreams, new love, new partners, new ways, new beliefs, new friends, every day is NEW

NEW is a beginning…a dream…a way forward. Tomorrow will bring a NEW day…to love…again

YES…IT WILL!

 

What is a wheelchair?

The whole concept of 'WHEELCHAIR' is much mis-understood. It is argued a wheelchair is an 'alternative to walking', or 'a wheelchair is for someone who can't walk', or 'a wheelchair is a mobility AID'.

All constructs are simplistic. A wheelchair is not about 'not-walking', a wheelchair is about 'living' , or rather 'not-living'. If you don't have one you simply cannot be part of the 'living'. A crap wheelchair is not about 'living', but is in fact torture. To be given a crap wheelchair by the HSE is abuse, is negligence, is dangerous and disrespectful. Its a breach of human rights.

Nor is a wheelchair 'just a bit of equipment'; a chair on wheels. it helps. NO again simplistic. Its not equipment, an object, it becomes, it's a living, vital, part of wheelchair users living being.  It being so, the body is enhanced, not diminished (unless the HSE decides all you need is crap), your body could be 'completed' with the RIGHT wheelchair. you can feel good again, part of the world again, part of the living. It's about EQUALITY not about disability!

It's a joy and a right. Precisely because it allows you participation once again...belonging, being, with ...your community.

So who uses a wheelchair? again simplistic answers. Those who CANNOT walk use wheelchairs. Right ...AND wrong too!

Yes, we all know those who acquire spinal injury or those born with spinal defects need to use a wheelchair. But this is not the full picture.

Many other people need wheelchairs.  Those with serious illness, they can walk but walking is difficult, or tiring, or just too damn painful. Those with fluctuating conditions, having good days and bad days. On the bad days a wheelchair is a must.

But too often society, communities are still ignorant. for many a wheelchair is only for the completely paralysed. Even doctors, occupational therapists, neighbours and family show complete mis-understanding of the wheelchair user.  We walk but only with difficulty, with pain, with hardship. Why because we have a rare muscle wasting/energy/parkinsonism/autonomic/metabolic disease. Plus arthritis and auto-immune diseases. REAL diseases. Here are some comments made to myself and my twin.

• "I saw them walking the other day they are NOT disabled" (written on a community facebook page where we live)
• "Why do you need a wheelchair when you can get up these stairs?" (A new GP to my sister)
• "don't bring your wheelchairs" (family member regarding a family event)
• "I heard parents at the school gates discussing whether you were really disabled today"  (reported to me by my neighbour)

So what is a 'really' disabled person? If you walk at all you are not disabled? Huh? Again, Simplistic. Disability spans a range of conditions. Some are 'dis-abled' by asthma, some are not. Some are 'dis-abled' by arthritis, some are not. Some are 'dis-abled' by spina bifida, some are not.

Some people in wheelchairs are NOT dis-abled, in the sense we use that word, unable (which is again a simplistic discourse). Whether you are disabled or not is a complex issue. for many disabled people they would argue the biggest dis-abling factor is NOT their condition/defect/disease but society's discrimination, beliefs, and negative views about them. Society's total disregard to allow them to work, rest, play within society. They argue they are not 'dis-abled' by their condition but by society.

It's become an issue to be judged by others. usually non-disabled people.  Non-disabled people largely decide whether or not you are disabled. whether or not you NEED a wheelchair. You are NOT allowed to say "I need a wheelchair".

You are not allowed say 'I need a living wheelchair', that means a GOOD one. The HSE do not supply a 'living' wheelchair. They supply crocks. This is discrimination. it is disrespect, it dis-ables you.

So folk, my message today.  Please educate yourself on what it really means to be a wheelchair user. It is not only about paralysis. please educate yourself about what the word 'dis-abled' means, it's not always about your condition, and often more about society. Please do not judge someone as not a genuine disabled, wheelchair user because you se them walk to the post office from the car, or into a chemist. This might be all they can do today.

As for the HSE, I have long ago lost all faith and trust in this evil empire. it is not there the serve. It's there to crucify. it does not uphold rights. the whole structures of this empire is to save money by not giving services . It crucifies both patients and the GOOD professionals within who really want to serve sick and disabled people.

But you the ordinary person...please don't add to the misery. 

a wheelchair is a right - it is my life - my living - my participation - my equality - my sanity - my being able.....alongside YOU!

Time Warp Ireland

In the Irish times immigrants and emigrants tell their stories. What it's like to leave Ireland and what its like to come back.  everyone seems to agree one thing...it's painful, whichever way you are travelling.

Recently someone wrote a piece about how returnees come back 'enlightened' or rather with their horizons expanded. They've changed, they've seen progress, new ideas, innovation, standards, policies of the new age. Then on returning nothing has changed HERE.  It's same old, same old , head in the sand, back slapping, brown envelope, who you know, keeping them on your side, happy skulduddery. 

That's when reality hits.  That's when you long to love Ireland like you used to...wasn't ignorance bliss. you simply never knew how narrow-minded, enmeshed, cronyism-rife, Ireland was. You didn't KNOW it was a small hick island! You just did not SEE it. you didn't know or experience it. Going away...changes you completely.

Coming home is harder than you might think. You didn't know how everyone is just a gossip, where confidentiality is not an ethical base of either business or health care or neighbourhood watch!

Where your GP can tell you how the consultant, YOUR consultant skipped the country for tax reasons! Where a villager you don't even know,  tells you some child you know was sexually abused in childhood and is a holy terror in school, where a neighbour can tell you who has died, who was robbed and who gets government grants and such like...

Where the local primary care team is beyond the pale in discrimination, oppression and deviousness to such an extent you need your solicitor in tow. Where they almost accuse you of 'forging doctors letters from a top hospital in England'. well they DID say; "we can't accept the doctors letters from YOU because you might have forged them, they must come directly from the consultants". You begin to worry whether they need to be 'locked up' by the men in white coats for severe psychotic paranoia!

Where consultants just don't know how to challenge the local primary care teams for your benefit, preferring instead to be 'Mr Nice Guy' to what he probably sees as his beleaguered medical colleagues. After all patients are truly out to screw you, aren't they! So the patient in extreme hysterical distress because the powered wheelchair she was in ploughed into a wall when the wheel flew off on her way to see him was translated to the primary care team as 'understandably upset'.   UPSET!? 

This is when weariness sets in. a bone weary lethargy ...of a magnitude enough to send you to bed in exhaustion. The 'fighting' with 'authority' gets you no-where because there is a game to be played, and its a game you don't know the rules to.  You are advised to 'tow' the line, go along with it, pretend you like it, agree to do it, etc... not because you believe it the right thing to do, but because its part of the Irish corrupt game everyone is playing and if you're not 'in' you are 'out'.  Its so well played the HSE have standard letters to send to TDs or local councillors which cleverly exonerates THEM and blames the patient. So the TDs and Councillors are 'happy' and they can rest assured the patient is making it all up.

You might think I've got a true bout of paranoia now...well when does healthy scepticism become the truth of how people operate? how does suspicion, because you see it time and time again, not become paranoia? good question.

All I know is I'm not paranoid, I am one not for turning. I can't play that game...I see it all so clearly...too clearly...I've been away for 42 years, I saw a different way, it was not like THIS where everyone tries to play a perverse game ....but you know its because they are encultured by corrupt education, religion, abuse and narrow-mindedness. they are quite simply, products of  a dysfunctional island. No manner of hanging on the trouser legs of Merkel makes this Island any better. it's infinitely WORSE for the right wing political shanigans of Kenny and co .

it would be best all round if the whole Island sank in the Irish sea.

Co Wicklow HSE primary care teams lack basic respect-times are changing...disabled clients demand more.

having an illness or an impairment is costly:

• It's expensive financially
• It's wearing emotionally & psychologically
• It's restricting & limiting
• It's depressing
• It's isolating                
• It's painful
• It's a struggle

Now most feel that this is due to the illness or impairment itself.  Not so! There is no real reason why to be sick or to have an impairment (disability) should make your life shrivel up to the inside of your home's 4 walls.

Apart from pain, the above list CAN be less onerous if the HSE services (Irish health Services) were at all geared to improving life.  But it isn't.

Community primary care services do NOT seem to regard their role as helping disabled or sick individuals live life to the full. Or is this just my situation! or is this just Co Wicklow?

If the first question asked was "how can we help you live your life to the full?" I would be in a far better position. But that's NOT the first question.  The first question appears to be..."how can I get out of doing Anything for Margaret Kennedy".  With the 2nd question being "How can I save the HSE money?"

It seems to be the case that I am not someone they went into their jobs to help, but to in fact persecute! I am, as one manager said; "not giving workers job satisfaction".  Well no, How can I in conscience praise a worker for a) unprofessional care b) no care, c) poor care...How can I honestly thank a professional worker for supplying me with a wheelchair from hell, ignoring what I say, and abandoning me?  At this point there is not ONE single HSE worker who I feel 'cares' or 'respects' me. So How can I honestly relate to them in a way where they can feel 'job satisfaction'.

In fact it's not I who make their job soulless. It's the government's choice to not give the financial wherewithal for professional's to do a good job. They haven't the resources and they are simply playing games with 'service users'. Pretending to offer a service when in fact they are not.

It's the pretence I'm supposed to be grateful for.  Why?

I supposed to be grateful for:

•  a crap powered wheelchair
• a non-existent service
• rude and offensive managers
• who lie (or at least; 'economy with the truth') and deny
• A service that actively refuses me respect, a voice or equality
• which runs roughshod over all policy documents concerning my rights

and has polished the art of letter-writing in such a 'political' way that everyone THINKS the HSE are wonderful and I am a mega-monster client!

I'm NOT a mega-monster. I refuse to be cowed. Refuse to accept a service that only exists to dis-empower, refuse to say something is OK when it's patently not.

I am an empowered disabled woman. Not to be shoved around. I am not malleable like putty. I won't be subservient.

I won't play the HSE game. I will continually demand that I be part of the solution, not just someone who is to be told what the solution is.

This, of course, is NOT what we sick and/or disabled people are supposed to be like.

So whilst the managers continue to try and batter me & my twin into the ground, into submission...We resist.  They don't like this. Not one little bit.

well...I and my twin have RIGHTS. It's time the HSE Co Wicklow caught up with disability strength and self-respect.

It's time Co Wicklow worked from that rights & respect perspective.

We are no longer in the Dickensian or Victorian age. It's an age of collaboration. Co Wicklow has to embrace it. Disabled people demand it. NOW!

will you just tell me the bloody results!

What do patients want? This might seem a strange question. Most just want to be treated, to get better, to be able to live and function with reasonable ease.


However it's not always so clear cut. Do you WANT to know what's wrong with you? Some do, some don't. Especially with really serious issues like cancer or HIV. Do you want your test results face-to-face, by email, with a friend present and so forth?  Personally If there are tests done no matter the seriousness I want the results NOW!  No faffing about.  No niceties, no carefully planned disclosure...just bloody tell me!

Everyone is different. but most know their human capacity for medical news. I hate, loathe, and detest others deciding when, how, if, to tell me results of tests undertaken. I loathe, hate, detest the Consultant's POWER over my body.

I want doctors to know my body is mine therefore any tests results are mine, not HIS. The sooner I get the information the better.

I hate, loathe, detest how some doctors write letters to other doctors as if I don't exist.  As if there is a 'background' mafia of doctors discussing me without my agreement, consultation, involvement. I want the day to come that doctors letters are approved & agreed by the patient BEFORE they are widely sent to every god damn professional in your care circle.

e.g. Did I give you PERMISSION to tell my consultant/GP that I had in my childhood ....da da,  da da, da da.....whatever.....

I wonder will the day ever come when patients and doctors are truly collaborative in disease discovery and treatment.

Here are some examples of all I detest:

1. We can't email your results...it's the hospital policy
2. your doctor will have to give you your results (not secretaries/nurses/social work/any other professional - ONLY YOuR DOCTOR.
3. You'll have to make an appointment to get your results
4. I can't give you copies of the letters I wrote to your GP
5. I can't give you copies of your test results/scans etc

The assumption that patients are probably all medically illiterate so 'let's just keep it simple and brief' is frustrating in the extreme!

I want to know EXACTLY what an errant test reading MEANS.  I don't want 'oh it's probably not important'. Of COURSE it's BLOODY IMPORTANT, there should not be errant tests results.

I don't want from the consultant "I've got ideas" , with me waiting with gaping mouth, expectant eyes, ears on the tremble waiting, waiting for the 'ideas' only to be told "ah we'll have to wait for the test results".

I don't want to be an interesting research specimen - even if I am 'rare' .

I am 62 a perfectly intelligent human being.  The attitude of doctors that we patients are somehow not responsible, or won't understand, or shouldn't be involved in medical things is totally outrageous.

They seem to have a pathological fear that we will run medically amok or psychologically amok with test results.

My message to doctors is;

1. Treat me like a valued colleague
2. keep NOTHING from me
3. Don't patronise me
4. Don't play the power games
5. communicate effectively, quickly and clearly

Just...

Stop messing me about and tell me the bloody results.
Thank You.