Forced consent?

I meant to put this up ages ago, sorry for the delay.

 

It would seem that in order to get patients to ‘consent’ to having an electronic record that will in the future be linked up to a national system, some a mental health trust in London has decided to withhold medical treatment from patients. The trust claims that providing care without it going on such a system is not safe. Why they think it is safer to withhold treatment is any ones guess.

 To me, this seems yet another example of how the public are being forced, and even having their life’s put at risk, if they refuse to roll over and give ‘consent’ to this sort of data sharing.

 As always, some links below

E-Health Insider

ComputerworldUK

Records Inappropriately accessed

It has been reported that the ECS of patients in Scotland has been accessed without patient consent. It is not kwon how many patients have been affected and when I was listening to the news last night it seems the NHS trust in question (Fife) do not know when the records were accessed or why they were accessed.

As usual, here are a couple of links about it.

http://news.bbc.co.uk/1/hi/scotland/edinburgh_and_east/7763349.stm

http://www.theherald.co.uk/news/news/display.var.2472801.0.rogue_doctor_accessed_files_for_unknown_reasons.php

Child protection

Breaking the distrust

Catchy titles are not something I’m good at, so I thought I would keep it simple.

 

Everyone knows there are 2 sides to every story and that those on opposing sides often think they know best. The question nobody seems to ask is, is that the best’s opinion to have and am I really right?

 

There are people that do not trust child protection officers and there are people who think they are brilliant. At the same time you get people like me who are always on the side of the child which means I am often against both sides. You would think that would be the best place to be, but in reality it is a rather uncomfortable and at times upsetting place to be because I see both sides go at it, often like they were possessed, and I see the child stuck in the middle. I know of people who have been saved because of child protection workers and I know of others that have had their life ruined by child protection workers.

 

Having never done an article like this before, I thought it would be easier to play devils advocate for both sides. I am hopping that by putting both sides in the same article along with some solutions I think would help, at least some of those on the opposing armies will have a truce and do what is best for the child, that is stop thinking they are always right, get rid of their ego and start talking to each other.

 

Why the distrust?

There are various reasons why the public distrust paediatricians who work in child protection and other child protection workers. They operate in a world more secret than the security services, they are perceived to assume they are always right, the court hearings are among the most secret anywhere in the world meaning there is little or no transparency, they rely on things that are virtually impossible to defend against and they are often seen as being able to do what ever they want.

 

Despite all these concerns (I’m sure there are more), child protection officers still can’t seem to understand why they get such a hard time.

 

Whilst child protection workers do need to have some powers to act in the child’s best interest, is it right for them to have so much power whilst working under such secrecy? Some of the concerns might be unfounded, but the perception of child protection workers is important, simply thinking or saying it is not right misses the point and fails to address the concerns raised.

 

There is an argument that these levels of powers, secrecy and lower standards of proof are all needed to protect the child, but do they hold water and who is benefiting the most, the child or the profession?

 

Secrecy

Whilst there is an obvious need to protect the child’s privacy, is this done to an extent that goes far beyond what is needed and worse still, does this level of secrecy mean the child’s right, both under the human rights act and the Convention on the Rights of the Child are breached? After all, does the child not have a right to a family? How many times have we read/heard about the rape/sexual assault of women and even children in the news without them being identified? Whilst it would be far easier to work out the identity of the child if the identity of those involved were released, is it impossible to release any information without revealing their identity?

 

Some time ago there was a TV programme about the way the family courts work. In part of the programme it was reported that they were not allowed to say if 3 ‘experts’ talked to the parents before deciding if they harmed the child. Would the reporting of such a crucial thing really risk the child’s right to privacy? Would revealing the ‘experts’ did not talk to the parents show that there was a serious flaw in the evidence?

 

These courts are so secretive that reporters are not allowed in the court room, yet reporters are allowed in courts that involve serious sexual offences. What is the difference?

 

Burden of proof

This is a very touchy subject in fact even suggesting the burden of proof is to low can get you in trouble with some people.

 

Whilst the burden of proof does need to be lower, especially for those that can not give evidence, does it need to be so low?

 

It is well known that what would be thrown out of court, can be used to have children taken into care and child protection workers see themselves as being better than anyone else. Some stories that have been reported simply go to show how dangerous it is to have such a low level of proof, especially in courts that are so secretive. I took just 10 min to find a few examples, given an hour or so the list could be longer even with the secrecy surrounding child protection.

 

Experience

Have you ever noticed how young some child protection experts and social workers are? Granted some are getting on in years, but others look as if they are not long out of school or worse still, should still be in school. Can someone who has never had to raise a family and has had very little life experience be expected to know what’s best? If their background has been both parents, well off, private school and brought up in a nice area, can that really prepare them for dealing with a single mum/dad from a poor family staying in a housing estate in Glasgow where you don’t go out after dark? Are they really going to know what’s best simply because of their training? Are their personal experiences going to have an influence on what they think is best for the child?

 

Granted, not every child protection expert or social worker should have had a crap upbringing and be old enough to get a free bus pass, but should there be a balance of backgrounds and age in cases involving child protection?

 

Combination of things

The combination of the low standards of proof, the attitude of child protection workers and the secrecy surrounding what happens only makes things much worse, yet very little, if anything, is done to change this. This leaves us asking the question, why?

 

The ‘experts’ side

I write this not based on much experience (although I do have some), so others might think I am wrong on what I have to say.

 

Protecting a child is one of the most important things anyone can do and saving a child from abuse or neglect has got to be one of the greatest things anyone can do.

 

There is nothing more upsetting than thinking a child is at risk and not being able to do anything about it, I should know, I have been in that position. If you thought a child was at risk, how far would you go to protect them? That is an important question, because thinking of an answer might give you an insight into how child protection workers might feel.

 

Child protection workers have one aim, protect the child. They are often stuck between a rock and a hard place. If they get it wrong and the child is harmed, the press complain about them and if they take a child away when they should not have, the press complain about them and parent groups get vocal.

 

There is also the amount of work involved to be considered. Back in 2005 social workers took to picket lines over their casework load. Putting aside the details of the Victoria Climbie case (one often sited by government as a example of how we need more and more intrusion into private life’s), this was a tragic example of excessive work loads. It was reported back in 2001 that the case worker involved was overworked and not properly supervised. Instead of having to deal with her target of 12 caseloads, she was reported to have had 18. This not only shows what harm can come to a child by workload overload, but it also raises the question about the workload of other social workers etc. If you have a workload far in excessive of what you can cope with mistakes will happen, children will not only be harmed, but children might be taken away without good reason. The latter of these is crucial when thinking about some social workers and child protection workers. Whilst there is no doubt there will be people determined to get children away from parents regardless of what everyone else thinks because they think they know better or they simply don’t like the parents lifestyle, but does this extra workload mean some child protection workers are overly keen to get things done and dusted, something that could be causing them to get it wrong?

 

Is it right to target a group of workers who are often overworked and often stressed? I am not saying it justifies what they do, but it can help understand why they work the way they do.

 

There is also the fear of getting it wrong. If you get it wrong and the child is taken away you might get the odd slap on the wrist, but who else will know? The secrecy surrounding the system is so tight, will anyone else ever know? Public criticisms of such people rarely make the headlines and when they do, other child protection workers often come to the rescue. You only have to look at the case involving Prof Southall to see how this can happen. Putting aside whether or not he should have been allowed to keep doing the work, it is not only an example of how no matter how bad you get it, people will protect you, it is also a excellent example of how the press and family groups will go for your throat. On the other hand if you get it wrong and harm comes to the child, you can start emptying your desk because when the shit hits the fan, the fan is usually held by your boss and politicians who aim it at you. You only have to look at what the social worker involved with Victoria Climbie went through to see how people can be used as an escape goat. Faced with those options, can anyone say that this has no effect on judgment?

 

There are also those dreaded targets that have to be met. I am not saying children should be taken away to meet targets, anyone who thinks that quite clear should not be working in child protection. What I mean by this is there are targets to be meet and people get in trouble for not meeting targets. If this is having an affect on the amount of children taken into care, then would it not be better for both sides to work together to get rid of these targets?

 

The combination of workload, targets, stress, fear of getting it wrong and a lack of life experience could be having an affect. That does not make the person evil or even just not a nice person, it means they are human beings working under extreme pressure yet they are often viewed as hostile and the enemy.

 

Improvements?

Whilst being the first to admit to not being a child protection expert, I fail to see why giving people a massive workload is better than taken on more staff to allow more contact time for staff and helping to reduce stress levels.

 

The stress levels is something I think is crucial. Can someone under extreme stress be expected to get it right every time? Allowing child protection workers uninhibited direct access to a specialist counselling service without their boss knowing (unless they were thought to be a risk) and decreasing workloads could do far more than simply collecting data in ways that have now been described as ‘data rape’. Does anyone know the amount of social workers and child protection workers that suffer from stress? If not, some really needs to do an anonymous survey because that is crucial.

 

To use a specific example, I will use MSBP. For things like MSBP should there be more places/spaces where children can be looked after with only parental supervision? That would allow the child to be safe whilst allowing the parents to see the child on a regular basis meaning if the parent is found not to be harming the child, the bond is not broken. If used in conjunction with more after birth health care for both parents, the parents could get help if they have emotional problems. Having supervised access could also allow parents to eventually take their children home with them if they get better. This would cost a lot of money but considering the £12 billion spent on the NHS database, £300 million spent on the child index and lots of other things, would it not be worthwhile spending something that could keep families together?

 

If you are a parent and you think your child is ill and get help only to find out nothing is wrong, will you ever take him/her back to hospital if you are worried about being called a liar who is making it up simply to subject your child to medical test?

 

All those involved in child protection and other social care work, need to sit back and ask the question, “Are we doing more harm than good”? This might seem like a stupid question, but with the way things are run and the way the government is planning on invading the privacy of parents and children. This is not such a stupid question.

 

Parent groups also need to sit back and think about what they are doing. If you push people, they push back, if you annoy them, they are not going to be all that nice to you ether. Sit back and think of ways to work with child protection workers, you might find you have common ground.

 

Consequences

With the way information, including sensitive information, is set to be shared with more and more people, will this see parents and children withholding information from others and not seeking help sooner for fear of losing their child or future children? It is easy to say they should, but why should the parents or the child not be allowed to get help in confidence? From where I am standing, it makes better sense to increase the ways people can obtain help and make it easier for them to get access. Why spend Billions on spying, when we could spend less on allowing people to get help far easier with not having to worry about the police, employers, insurance companies, social services and others finding out? There will always be people who refuse to get help and others who are determined to harm their child, but are the current systems and the proposed increase on data sharing going to help? I doubt it simply because you can only share data you have and if parents and children do not share info out of fear, nether can you.

 

What also seems to have been ignored are the consequences of collecting so much information when it comes to workload. The child index/database/contact point (its name has been changed a few times) is set to increase the amount of information in a way that there will be very few families not in contact with social services, yet has the government decided to increase the amount of social workers and other child protection workers to match the workload? Will 16 case loads soon be the norm?

 

The system needs to be changed to the point where social workers etc are seen as people you go to for help rather than people who come to your door at 6 in the morning to take your child away. For that to happen, everyone needs to stop viewing the army on the other side of the battle line as if they were in the trenches in World War One because at the end of the day both sides want what is best for the child, a family and to be safe.

 

There are some key question government and child protection workers need to address:

 

1. If a child protection worker thinks someone is withholding information will they jump top the conclusion that the child is at risk?
2. Should we as citizens in a free country have to worry about who will know if we have a drink or gambling problem?
3. Would it be better if we could get help without others knowing or should be denied help if we are not prepared to tell social workers, schools, police etc?
4. What is best for the child, being allowed to get help without others knowing or simply not getting help?
5. Is it better to have more child protection and social workers to lessen their workload to allow them to make a more involved judgment or better to simply invade the privacy of families?
6. Is it best to have more places where families can get help or is it best to simply build databases to collect info about them?
7. Will the way more and more info is accessed and shared mean there will be an increased workload and if so, will this make matters worse?

 

 

There is a balance to be struck between protecting children, protecting child protection officers and protecting privacy. So long as child protection workers use outdated laws to prevent the public knowing what they do, so long as they intrude more and more into the life’s of families and are seen to be protecting each other, the public will have no trust in child protection workers and that will see children harmed. Simply saying you are an expert and expecting people to believe you and making no apology for getting it wrong is not good enough. On the other hand, so long as family pressure groups see child protection workers as the enemy and treat them with disgust, nothing will change and families will be torn apart and worse, children will die.

 

My experience of dealing with child protection workers is not a direct one but I have had close friends who have had direct experience in the past, including a 12 year old girl who was failed because of the way the system worked then (might be different now). That 12 year old was to become the best friend I have ever had, but because of the system in place at the time and not being able to get help when she needed it, she committed suicide at the age of 19, an experience that has stayed with me all these years. On the other hand my experience of being ‘harmed’ because of the way data is shared is something I have a lot of.

http://www.telegraph.co.uk/news/uknews/1468412/Children-are-taken-away-andndash-but-the-system-can’t-admit-it’s-wrong.html?pageNum=3

 

http://www.computeractive.co.uk/computeractive/news/2224775/child-database-hit-fresh

 

http://www.fipr.org/childrens_databases.pdf

http://www.rcpsg.ac.uk/Education/Documents/Good%20Doctors%20Safer%20Patients.pdf

 

http://www.computerweekly.com/blogs/tony_collins/2008/02/police-will-be-allowed-searche.html

 

http://www.guardian.co.uk/society/2006/sep/08/childrensservices.politics

 

http://www.justice.gov.uk/docs/National-Society-for-Prevention-of-Cruelty-to-Children-Data-Sharing-Response.pdf

 

http://www.justice.gov.uk/docs/Childrens-Rights-Alliance-for-England-Data-Sharing-Response.pdf

 

http://www.everychildmatters.gov.uk/deliveringservices/contactpoint/

 

http://www.wilson-nesbitt.com/articles/858/14072008/family_court_concerns_revealed.html

 

http://www.communitycare.co.uk/Articles/2007/03/27/103929/family-court-used-flawed-medical-advice-to-wrongly-remove-child-from-parents.html

 

http://www.hmcourts-service.gov.uk/infoabout/children/famcourt/index.htm

 

http://news.bbc.co.uk/1/low/uk/1115166.stm

 

http://www.opsi.gov.uk/ACTS/acts1998/ukpga_19980042_en_1

 

http://www.unhchr.ch/html/menu3/b/k2crc.htm

 

http://www.timesonline.co.uk/tol/comment/columnists/camilla_cavendish/article4288255.ece

 

http://news.bbc.co.uk/1/hi/scotland/5272092.stm

 

http://www.communitycare.co.uk/Articles/2007/09/14/105785/tape-interviews-in-child-protection-cases.html

 

http://www.dailymail.co.uk/news/article-1064930/8-000-couple-baby-wrongly-taken-away-social-workers.html

 

http://business.timesonline.co.uk/tol/business/law/article2317284.ece

 

http://www.guardian.co.uk/society/2005/jan/11/politics.tradeunions

 

http://www.timesonline.co.uk/tol/news/politics/article2332307.ece

 

More access to health records?

It is not long since people like me warned about the increasing access to our medical records and now the NHS seems to be confirming our greates fears.

Bellow are links to stories about how there are plans to increase the amount of people with access to our records. It is bad enough a patient cant tell their GP something without having to let every doctor and nurse they see at the practice know about it despite there usually not being a ‘need to know’ basis, It is bad enough reception staff are getting access to our records and knowing our test results and what medications we have been issued, now they want to social care, voluntry orgs, private firms, researchers and never ending list.

 

Will doctors defend the patient right to privacy? Dont bank on it!

http://www.ehiprimarycare.com/news/3915/access_to_nhs_care_records_may_be_widened

http://www.ehiprimarycare.com/news/3947/data_sharing_review_has_messages_for_the_nhs

Types of people who ‘protect’ data

When it comes to medical privacy there is often a lot of talk from those who want to share/access identifiable data about how data will be protected and they can control access. Unfortunatley these are often grouped into 3 different groups.

1. There are those who have a low standard of protection. An example of this would be most GPs. GPs often tell patients that what they learn in the course of their work will go no further and their records are protected, yet a lot will often start telling people about tye patient so the information can get into the patients records, as one of my ex GPs said “doctors do not do notes, that is someone elses job”. In other words, the min the patient leaves, the GOP will tell someone else. I have also found that most calldicott Gaurdians come under this group. As with GPs, their standard of aproprate sharing of data is often far lower than what patients think and when it comes to privacy, they rarely, if ever, will hear both sides of any complaint, usually deciding to side with their friends who also have a low standard. This is further complicated in that they are often paid by the people they are overseeing even though this creates a conflict of interest. Who have to ask whos interest they have at heart, their own or that of the patient? Unfortunatly I have found they have the interest of their own at heart and most would rather protect the reputation of health workers and the NHS than tell the truth. This group of people are the low of the low as far as I am concerned. they lie to patients to obtain data/carry out examinations and when patients do get told they ether attempt to make the patient think it is for their own good and those patients that see past this Bull are given 2 simple choices, ’share or die’. This group will also often share data so that it can be passed to others for targets or payments. In some cases it will be identifiable but even if it is not, the people accessing the records to get it will have access to the identity of the patient.
2. There are those who think they have a high standard by are not aware of what is being shared. An example of this are some Calldicott Gaurdians and some health workers (not all are scum, just most). Some will tell you that when it comes to the police and social services they will tell them to ‘get stuffed’. Whilst this seems good, they are often unaware of data sharing. for example data from the new Summary Care Record in the NHS in England will be copied in a way that police and social services have access. This means that when they tell the police or SS to ‘get stuffed’, the police and SS will simply access the data from somewhere else (such as SUS) or they will alreday have the information anyway. At the same time anti-privacy laws/legislation in the UK is being introduced faster, meaning any promise about privacy is no protection. Other groups of people that come under this are those who work in Sexual Health Clinics. These people are often unaware that identifiable data can be shared with researchers, but I have to say that some will know but simply not tell the patient
3. The last, and by far the smallest group, are those who do protect data. These people are far and few between. they will store data in a way that others can not access and they will stand up to those who demand it. Some will even not record data. An example of this are some therapist. If you wanted some therapy, you can often tell the person you are seeing that you do not want anyone else to know what you are there for. Whilst some will refuse to see you unless you ‘consent’ to notes being kept others will agree not to keep notes (the disadvatage of keeping notes is that they can be accessed under some UK laws by others. Although this does not happen often, it is staill a risk). Some of those that demand they make notes willl often make them very brief and a broad outline.

ChildProtectionLine, good or bad?

I only heard about this via the media, so I contacted the Scottish goverment about it. To my suppsrise I got a prity full reply (not often that happens!).

From what I could make out from the reply, there are good and bad points about it (some of the questions/issues are still not sorted).

Good. This is a single phone number that people can call if they are not sure who to call. The people on the other side of the phone will be able to direct people to the relevant department/service. That means if the SS (social services) are the best people to contact, then they will be directed there, if it’s the police, then they will be directed there. This should save time in getting things sorted and it makes sure the right people are contacted. It should (if it works OK) mean that children can be saved/protected more than they are just now.

BAD?. There are few things in life that are all good, and this is no exception. In theory there will not be a creation of a national database of accused, but with the goverment looking to creat things like the childs index, then it means there is a database be default. It also means that that anyone with access to the child index (SS, police, schools, local authorities, fire service, health authorities etc) will be able to find out the family are being investigated. Some of them should know, but why would the fire service ‘need to know’? In theory those accused will be able to clear their names, but that is easier said than done (dont forget that forced adoptions have increased 3 fold in some areas after ‘targets’ for adoption were brought in and the SS are famous for miscarages of justice and operate under secrecy to the extent the concept of a ‘fair trial’ is not a garantee). There is also no way of knowing if their file will be deleted if they are found not guilty (remember even children never charged or cautioned have a ‘police record’ and have their DNA stored nationaly). It could (even if this is not the aim) mean that a national network of accused is set up due to the ‘joined up’ thing the goverment is keen on.

There is also the issue about people own perecption of what is right. There are people that think you should never drink when you have children, so could they report people that fail to meet their own personal standards? The theory is, they accused would be investigated but as I pointed out above, this has it’s own problems. There is also the issue of double reporting. That should be sorted out quickly, but the fact that some others have been brought in, such as the SS, could mean it appears on their childs record available via the child index. Having never done drugs, I dont know if people seeking help are always reported to the police or SS. This new scheme seems to garuntee they would be brought in.

There is also a question mark about how you check people are drinking too much or taking drugs. Would all accussed be forced to have a edical exam to test for drugs or conditions that could be caused by drinking? Would they be required to have a breath test for alcohol on a random basis? With goverment having a ‘nothing to hide, nothing to fear’ card for everything, would this be used against parents? Would children be asked about the acctivities their parents get up to? Would the accused be allowed to chalange claims made by others, such as neibours?

Would info get into the accused medical records? This is something the reply does not full answere. It is important that the choice about having the info stored in the medical record of the accused is only done with explicit consent, yet that is not a garuntee. Dont forget who will have access to this record. It is not just the GP, there are all the doctors/nurses and a large amount of admin staff at the practice (and future practices) who will have access. There are insurance comapines, employers can ask for it and with the goverment looking more and more at national records. I have managed to avoid some of these problems (cant do anything about insurance comapines or employers as the Scottish goverment could not care less about the level of access these scum have), but that was only after being treated like dirt by NHS Grampain and other PCTs, by me endgaering my health and by me not giving in to scum. I dont know of anyone else who has that protection/privacy, yet info could be getting put in their records without their explicit consent.

I fully support the idea of protecting children, but there is so much secrecy (this only protects doctors, SS, creates distrust, causes serious misscarages of justice and allows SS to do what ever it takes to get children. See links bellow).

There does seem to be better ways of helping drug users and people with other problems. The only problem is, this would need to be a truly confidential service and the goverment would ratehr spend money on paying locums £1000 a day or spend money on out of hour services to justify spending hundreds of millions (£20 billion in England) on national medical records that are less secure that the goverment claims. They could spend more money on having enough social workers, but again, they dont seem to fancy that idea. They seem to think it is better to set up a net work where neibour spies on neibour and thos who object to be spied on are simply told ‘nothing to hide. nothing to fear’. At the same time, they complain if they are monitoured talking to a suspected terrorist. I am not saying nothing should be done, but is a national phone number the best way to proect children or would it be better to help the people this number is targeting (suspected drug and alcohol abusers)?

Some links you might want to read:

http://www.telegraph.co.uk/news/main.jhtml?xml=/news/2007/07/15/nadopt115.xml

http://www.forced-adoption.com/introduction.asp

http://www.telegraph.co.uk/news/main.jhtml?xml=/news/2007/08/05/nadopt105.xml

Student data lost in post

Seems data is still going missing. When will these people learn!?

http://news.bbc.co.uk/1/hi/scotland/7210358.stm

Tax return site seems to be ‘too risky’ for some people. (http://www.telegraph.co.uk/news/main.jhtml;jsessionid=VUWTDRLGXJMBFQFIQMFCFGGAVCBQYIV0?xml=/news/2008/01/26/ntax126.xml).

there is a website that gives a list of some other breaches. This is not a compleate list (for example last time I checked it did not mention Grampian NHS losing data 8 times in 5 years and it would be very difficult to list all breaches that have taken place at a more local level). http://www.openrightsgroup.org/orgwiki/index.php/UK_Privacy_Debacles

Some examples

Below are just 5 examples of moral/ethical questions that need to be asked about medical privacy.

I decided to do this as a separate thing so that people who have an interest in such things, can see some basic questions that I have.

There are loads of examples, including the example of identifiable data being released from GUM clinics in England without patient consent that I could have put in, but I thought it best to start with the basics

It is because of these examples and the fact most patients are not aware of what is being shared (one patient pointed out that talking to a doctor was like talking to priest) that I get my back up. Informing patients does not take long. It can be as simple as printing off what the receptionist can see and showing that to the patient. Some patients might not be that bothered, but others would be. Some patients might not be that bothered about who sees their referral letter, test results for things like STDs/STIs (cervical smear test results are now held on one national database in Scotland without the informed consent of patients and despite the fact this database is not as secure as it should be) or who knows that they are on Viagra but others would be. It takes seconds to tell a patient that you dictate to a secretary who will know who you are and what is wrong with you, yet doctors and nurses seem to hate the idea of telling patients the truth. They give the impression that they keep info private, yet this is far from reality. Telling your doctor/nurse or any other health worker is far from ‘confidential’. 

NHS database

There is so much info about this, it would be easier to check out the link bellow. If you are wondering who I am, I post under the name ‘medical privacy’. If you click on any of my post, you can get a list of all the comments I have made about the ‘data rape’ the NHS are planning and a few other things.

http://forum.no2id.net/viewforum.php?f=58&sid=5adbb0b11b37864619586a8d52d0abb1