Untitled Document

Electronic records: do you consent?

The NHS is now rolling out the uploading of medical records to the national database at great speed. The 'summary care record' will contain details of current prescriptions, allergies and previous bad reactions to medication. Later many other details of your care will be added to the electronic record.

The BMA says that it is being rushed out too fast, with patients being given too little information and too little opportunity to opt out.

Once you receive a letter you will have to notify your GP if you want to opt out of the system. If you do not do so within twelve weeks consent is assumed and the record will be uploaded.

We have always believed that no data should be uploaded without the patient's explicit consent but the organisers, NHS Connecting for Health, set their faces against this - too expensive, too slow, too much trouble! We were assured that every patient would be well informed and have full opportunity to opt out if they wished. A survey of the pilot areas by University College showed that, in spite of all the information efforts, with a letter going to every house, the majority of patients had no idea that their records had been uploaded. A further report was commissioned on the planned rollout but Connecting for Health have gone ahead without waiting for its findings.

The information booklet now going the rounds in rollout areas reads like a sales pitch. It is bland, it pushes the benefits of the database hard and only gets round to the possibility of opting out at the end of the booklet. There is no opt out form - you have to make the effort to obtain it. When you do get it, you have to sign under several stark warnings that your care may suffer and you may be at risk. Some doctors are arguing that these are deliberate scare tactics as there is little evidence that there would be any adverse effects.

The Londonwide Local Medical Committees (LMC), which advises GPs, has suggested that they put out their own factsheet, which spells out the pros and cons evenhandedly, together with a form giving three options: ‘opt in', ‘opt out', ‘will decide later'. You can see this at http://www.lmc.org.uk : click on Guidance, then Summary Care Records, Latest News.

Patient Concern would like to see all areas adopting this scheme. Most patients will consider that electronic records can offer them benefits but we must be able able to weigh up all the implications so that we can decide for ourselves how we want to control our own data.

Patient safety report

A report on Patient Safety from the House of Commons Health Committee says

1. Too little progress to making the NHS safer has been made over the past ten years. The amount of medical harm is substantial but waiting times and finance tend to be given more priority and there has been no attempt to produce up to date reliable figures.(Our comment: the National Patient Safety Agency, set up in 2001, costs £30 million a year. In view of the lack of progress this is not value for money.)

2. Recent changes to the complaints process will not improve the way the NHS deals with complaints. The independent review stage should be reinstated. (See below) The Patient Advice and Liaison Service (PALS), the gateway to the NHS complaints system, should not be hosted by individual NHS organisations and must be independent.

3 There is still no timetable to introduce the NHS redress scheme. The scheme, which was promised three years ago, aims to help remove the need for harmed patients to go to law to obtain justice and compensation

Nurse whistle-blower reinstated

Margaret Haywood, who was struck off the nursing register by the Nursing and Midwifery Council because she filmed the sub-human conditions suffered by elderly patients in Royal Sussex County Hospital for Panorama, has been reinstated. The NMC backed down just before an appeal was due to be heard in the High Court. Margaret now simply has a caution for one year and can return to nursing right away.

This is a triumph of reason and fairness at last. Technically Margaret had breached patient confidentiality but only because it was the only way she saw of protecting suffering patients. Patient Concern campaigned vigorously for this outcome, including protesting to the NMC, e-mailing every MP to ask them to sign an early day motion in her support and spoke to heads of various regulatory bodies urging them to intervene.

Sadly, damage has been done. Not only has Margaret suffered months of misery but the NMC has sent out the message that nurses who see appalling conditions on the ward, and have their concerns ignored by management, should keep quiet about it. If they don't, they risk the chop. They showed more concern for their rule book than for the safety and welfare of patients. Shame on them.

We were delighted that Margaret won the prestigious Patients' Choice Nurse of the Year in the Nursing Standard's awards. Thanks to all of our supporters who followed our urging to vote for her.

Are you complaining?

The Department of Health has changed the complaints system yet again. Now the Healthcare Commission no longer exists. In practice, this means that we now have no automatic right to further investigation if we are not satisfied at the 'local resolution' stage. Our only recourse is now to the Ombudsman, who will decide whether or not to take the complaint further.

The Department of Health now expects local resolution to work well (why, when it has so signally failed in the past?).They have abolished the strict time limits for responding to complaints (25 working days) and they now talk about six months instead! They issue guidelines but every NHS organisation has been left to work in its own way. This usually means that some providers do all they can to resolve complaints - and others do very little.

So far every system the DH has put in place has failed. This system had failure written all over it before it began. We are hearing from a number of patients who find that it is useless to launch a complaint against a health service worker if it is one person's word against another (for instance, a case of alleged sexual assault). The Trust will normally back their employee without even interviewing the complainant and the Ombudsman declines to take it further because it is 'not possible to reconcile the two accounts' or 'there is no independent evidence'. In our magistrates courts most trials involve one person's word against another. If they followed the same system as the health service they would have little work. and justice would be hard to come by.

The complaints system will never achieve any fairness until there is some independent tribunal to make a determination on who is telling the truth and resolve serious complaints.

If you have first hand experience of the complaints system, we would like to hear about it.

Confidentiality under attack

The Department of Health is planning a new system that will allow researchers to comb through our confidential medical records in order to identify patients who might be suitable to take part in research projects. Once again, they plan to press ahead on the basis of 'presumed consent' so that our records can be examined unless we have 'opted out'. - though this proved a disaster in the pilot areas of electronic records (see below).

We believe that our records should only be open to researchers if we have agreed to this, so that our records can be flagged accordingly. Otherwise the confidentiality and privacy of our medical files is on the way to being a thing of the past.

Duty of candour in healthcare: support the campaign

Action against Medical Accidents (AVMA) is campaigning to make it a legal duty to tell patients or their next of kin about mistakes or incidents that have, or may have, caused harm - a 'duty of candour'. This was recommended (not for the first time) in the House of Commons Health Committee report on Patient Safety, July 2009. Several countries have introduced this legal duty but here less than a quarter of NHS trusts routinely inform patients of a patient safety incident and there is no obligation on them to do so. We need openness and honesty and instead the Department of Health admits the NHS has a 'culture of denial'.

A duty of candour could be introduced very easily by a clause in the regulations (being drafted now) covering registration with the Care Quality Commission. Those not complying would risk de-regulation or heavy fines.

Support the campaign by signing the petition at
http://www.gopetition.com/petitions/duty-of-candour.html
Contact your MP and ask him/her to support the campaign.

Successes!

1. The government has announced that it is to ban private organ transplants. When it was revealed that some hospitals are using donor organs for private operations on foreign nationals at £75,000 a time Patient Concern protested vigorously to ministers and to the chief executives of the hospitals involved. We pointed out that this was not only deeply immoral but deeply unhelpful to the whole transplant programme and demanded that it should be stopped immediately. We believe that transplants are in a completely different category from other private surgery because they depend on a donated organ. When it is illegal for us to sell our own organs, it must be wrong that a hospital can use them to make money. For once, the government has listened.

2. Patient Concern was one of 23 organisations who petitioned the government to remove clause 152 from the Coroners and Justice Bill. This clause would have meant that the Secretary of State could allow our confidential information collected for one purpose to be used for another, without our consent - e.g. our health records could be passed to medical research organisations or insurance companies.
This had been slipped in at the end of a lengthy bill dealing with quite different issues. In the face of determined opposition, the government backed down and removed clause 152.

3. The GMC, in its updated draft guidelines on end of life care, says plainly that doctors must not start or continue life-prolonging treatment if a patient with capacity has refused it. Of course, this fits in with the Mental Capacity Act, but we hear that some doctors are still reluctant to follow the patients' wishes.
The GMC seldom says that doctors must do anything and their ruling means that doctors risk being struck off if they deliberately ignore patients' decisions.

Opt-out for organs rejected

We are delighted that the report of the Organ Donation Taskforce has rejected the idea of an 'opt out' system, which would mean that everyone was regarded as a potential donor unless they had specifically registered a refusal.

Gordon Brown and the BMA have backed the idea, claiming that it would substantially increase the number of transplants. This year three expert bodies (the Lords EU committee, the Welsh Assembly and now the Taskforce) have decided that there is no convincing evidence for this idea - and that it might even result in a decrease of available organs.

We are relieved that this theory of a 'quick fix' has been decisively rejected by everyone who has bothered to examine the evidence. We hope that the government will now have to put its money where its mouth is and set up an efficient transplant system, rather than pretending that taking away our right to informed consent is an easy answer.

Patient Concern was asked to give oral evidence to the Lords and the Welsh Assembly and submitted a detailed paper to the Taskforce.

Dying in pain

We are receiving too many reports that terminally ill patients are living and dying in unnecessary pain. Since the crimes of Harold Shipman hit the headlines, there's a tendency for doctors to become over-cautious. Many GPs now refuse to carry morphine and we hear of hospital staff who are more concerned with pouring over their protocols and protecting their backs than giving their dying patients the pain relief they need.

This is against all good practice guidelines, which make it clear that doctors can give sufficient medication to relieve a patient's suffering, even if this shortens his/her life - providing that their intention was not to bring about the patient's death.

Please let us know, in confidence, if this has affected someone in your family.

Struck off?

The Healthcare Commission tells us that 15% of the complaints they receive about GPs concern patients who have been struck off their lists. This can mean that patients are labelled as 'difficult' and find it hard to enlist with another doctor. This is something we must tackle. Let us know if it has happened to you.

Access to GPs

The other ongoing GP problem is over access. Patient Concern spent two years fighting the system where GP practices, chasing the 24 hour target, refused to allow booking of advance appointments. We were instrumental in changing the system in a number of surgeries long before the problem hit the headlines.

Things have improved, with most surgeries now maintaining that they allow advance appointments up to three weeks ahead. However, many patients tell us that this is something of a sham, with so few advance appointments available that it is still almost impossible to see the doctor of their choice.

We have met with the Department of Health on the subject and they are determined that this must stop. Keep us in the picture on what is happening in your area and we will pass it on.

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				Baroness Young resigns We regret that Baroness Young has found it necessary to resign as head of the Care Quality Commission, having been in the post for less than a year. She was one person we felt could have made a difference to the unsatisfactory regulatory regime in healthcare. The CQC has rightly been branded 'toothless' and Baroness Young was obviously bent on changing that. Figures reveal that some 3000 patients a year are dying needlessly because of poor hospital standards, and that some of the worst offenders for high death rates have been foundation hospitals. Foundation status was supposed to be a marker of excellence, allowing management more freedom. The ridiculous sysem of allowing hospitals to assess themselves has resulted in 'good' or 'excellent' ratings just a few weeks before an inspection showed appalling standards. We want to see both foundation status and the self-assessment scheme abolished and a reliable inspection system put in place.





				Electronic records: do you consent? The NHS is now rolling out the uploading of medical records to the national database at great speed. The 'summary care record' will contain details of current prescriptions, allergies and previous bad reactions to medication. Later many other details of your care will be added to the electronic record. The BMA says that it is being rushed out too fast, with patients being given too little information and too little opportunity to opt out. Once you receive a letter you will have to notify your GP if you want to opt out of the system. If you do not do so within twelve weeks consent is assumed and the record will be uploaded. We have always believed that no data should be uploaded without the patient's explicit consent but the organisers, NHS Connecting for Health, set their faces against this - too expensive, too slow, too much trouble! We were assured that every patient would be well informed and have full opportunity to opt out if they wished. A survey of the pilot areas by University College showed that, in spite of all the information efforts, with a letter going to every house, the majority of patients had no idea that their records had been uploaded. A further report was commissioned on the planned rollout but Connecting for Health have gone ahead without waiting for its findings. The information booklet now going the rounds in rollout areas reads like a sales pitch. It is bland, it pushes the benefits of the database hard and only gets round to the possibility of opting out at the end of the booklet. There is no opt out form - you have to make the effort to obtain it. When you do get it, you have to sign under several stark warnings that your care may suffer and you may be at risk. Some doctors are arguing that these are deliberate scare tactics as there is little evidence that there would be any adverse effects. The Londonwide Local Medical Committees (LMC), which advises GPs, has suggested that they put out their own factsheet, which spells out the pros and cons evenhandedly, together with a form giving three options: ‘opt in', ‘opt out', ‘will decide later'. You can see this at http://www.lmc.org.uk : click on Guidance, then Summary Care Records, Latest News. Patient Concern would like to see all areas adopting this scheme. Most patients will consider that electronic records can offer them benefits but we must be able able to weigh up all the implications so that we can decide for ourselves how we want to control our own data. Patient safety report A report on Patient Safety from the House of Commons Health Committee says 1. Too little progress to making the NHS safer has been made over the past ten years. The amount of medical harm is substantial but waiting times and finance tend to be given more priority and there has been no attempt to produce up to date reliable figures.(Our comment: the National Patient Safety Agency, set up in 2001, costs £30 million a year. In view of the lack of progress this is not value for money.) 2. Recent changes to the complaints process will not improve the way the NHS deals with complaints. The independent review stage should be reinstated. (See below) The Patient Advice and Liaison Service (PALS), the gateway to the NHS complaints system, should not be hosted by individual NHS organisations and must be independent. 3 There is still no timetable to introduce the NHS redress scheme. The scheme, which was promised three years ago, aims to help remove the need for harmed patients to go to law to obtain justice and compensation Nurse whistle-blower reinstated Margaret Haywood, who was struck off the nursing register by the Nursing and Midwifery Council because she filmed the sub-human conditions suffered by elderly patients in Royal Sussex County Hospital for Panorama, has been reinstated. The NMC backed down just before an appeal was due to be heard in the High Court. Margaret now simply has a caution for one year and can return to nursing right away. This is a triumph of reason and fairness at last. Technically Margaret had breached patient confidentiality but only because it was the only way she saw of protecting suffering patients. Patient Concern campaigned vigorously for this outcome, including protesting to the NMC, e-mailing every MP to ask them to sign an early day motion in her support and spoke to heads of various regulatory bodies urging them to intervene. Sadly, damage has been done. Not only has Margaret suffered months of misery but the NMC has sent out the message that nurses who see appalling conditions on the ward, and have their concerns ignored by management, should keep quiet about it. If they don't, they risk the chop. They showed more concern for their rule book than for the safety and welfare of patients. Shame on them. We were delighted that Margaret won the prestigious Patients' Choice Nurse of the Year in the Nursing Standard's awards. Thanks to all of our supporters who followed our urging to vote for her. Are you complaining? The Department of Health has changed the complaints system yet again. Now the Healthcare Commission no longer exists. In practice, this means that we now have no automatic right to further investigation if we are not satisfied at the 'local resolution' stage. Our only recourse is now to the Ombudsman, who will decide whether or not to take the complaint further. The Department of Health now expects local resolution to work well (why, when it has so signally failed in the past?).They have abolished the strict time limits for responding to complaints (25 working days) and they now talk about six months instead! They issue guidelines but every NHS organisation has been left to work in its own way. This usually means that some providers do all they can to resolve complaints - and others do very little. So far every system the DH has put in place has failed. This system had failure written all over it before it began. We are hearing from a number of patients who find that it is useless to launch a complaint against a health service worker if it is one person's word against another (for instance, a case of alleged sexual assault). The Trust will normally back their employee without even interviewing the complainant and the Ombudsman declines to take it further because it is 'not possible to reconcile the two accounts' or 'there is no independent evidence'. In our magistrates courts most trials involve one person's word against another. If they followed the same system as the health service they would have little work. and justice would be hard to come by. The complaints system will never achieve any fairness until there is some independent tribunal to make a determination on who is telling the truth and resolve serious complaints. If you have first hand experience of the complaints system, we would like to hear about it. Confidentiality under attack The Department of Health is planning a new system that will allow researchers to comb through our confidential medical records in order to identify patients who might be suitable to take part in research projects. Once again, they plan to press ahead on the basis of 'presumed consent' so that our records can be examined unless we have 'opted out'. - though this proved a disaster in the pilot areas of electronic records (see below). We believe that our records should only be open to researchers if we have agreed to this, so that our records can be flagged accordingly. Otherwise the confidentiality and privacy of our medical files is on the way to being a thing of the past. Duty of candour in healthcare: support the campaign Action against Medical Accidents (AVMA) is campaigning to make it a legal duty to tell patients or their next of kin about mistakes or incidents that have, or may have, caused harm - a 'duty of candour'. This was recommended (not for the first time) in the House of Commons Health Committee report on Patient Safety, July 2009. Several countries have introduced this legal duty but here less than a quarter of NHS trusts routinely inform patients of a patient safety incident and there is no obligation on them to do so. We need openness and honesty and instead the Department of Health admits the NHS has a 'culture of denial'. A duty of candour could be introduced very easily by a clause in the regulations (being drafted now) covering registration with the Care Quality Commission. Those not complying would risk de-regulation or heavy fines. Support the campaign by signing the petition at http://www.gopetition.com/petitions/duty-of-candour.html Contact your MP and ask him/her to support the campaign. Successes! 1. The government has announced that it is to ban private organ transplants. When it was revealed that some hospitals are using donor organs for private operations on foreign nationals at £75,000 a time Patient Concern protested vigorously to ministers and to the chief executives of the hospitals involved. We pointed out that this was not only deeply immoral but deeply unhelpful to the whole transplant programme and demanded that it should be stopped immediately. We believe that transplants are in a completely different category from other private surgery because they depend on a donated organ. When it is illegal for us to sell our own organs, it must be wrong that a hospital can use them to make money. For once, the government has listened. 2. Patient Concern was one of 23 organisations who petitioned the government to remove clause 152 from the Coroners and Justice Bill. This clause would have meant that the Secretary of State could allow our confidential information collected for one purpose to be used for another, without our consent - e.g. our health records could be passed to medical research organisations or insurance companies. This had been slipped in at the end of a lengthy bill dealing with quite different issues. In the face of determined opposition, the government backed down and removed clause 152. 3. The GMC, in its updated draft guidelines on end of life care, says plainly that doctors must not start or continue life-prolonging treatment if a patient with capacity has refused it. Of course, this fits in with the Mental Capacity Act, but we hear that some doctors are still reluctant to follow the patients' wishes. The GMC seldom says that doctors must do anything and their ruling means that doctors risk being struck off if they deliberately ignore patients' decisions. Opt-out for organs rejected We are delighted that the report of the Organ Donation Taskforce has rejected the idea of an 'opt out' system, which would mean that everyone was regarded as a potential donor unless they had specifically registered a refusal. Gordon Brown and the BMA have backed the idea, claiming that it would substantially increase the number of transplants. This year three expert bodies (the Lords EU committee, the Welsh Assembly and now the Taskforce) have decided that there is no convincing evidence for this idea - and that it might even result in a decrease of available organs. We are relieved that this theory of a 'quick fix' has been decisively rejected by everyone who has bothered to examine the evidence. We hope that the government will now have to put its money where its mouth is and set up an efficient transplant system, rather than pretending that taking away our right to informed consent is an easy answer. Patient Concern was asked to give oral evidence to the Lords and the Welsh Assembly and submitted a detailed paper to the Taskforce. Dying in pain We are receiving too many reports that terminally ill patients are living and dying in unnecessary pain. Since the crimes of Harold Shipman hit the headlines, there's a tendency for doctors to become over-cautious. Many GPs now refuse to carry morphine and we hear of hospital staff who are more concerned with pouring over their protocols and protecting their backs than giving their dying patients the pain relief they need. This is against all good practice guidelines, which make it clear that doctors can give sufficient medication to relieve a patient's suffering, even if this shortens his/her life - providing that their intention was not to bring about the patient's death. Please let us know, in confidence, if this has affected someone in your family. Struck off? The Healthcare Commission tells us that 15% of the complaints they receive about GPs concern patients who have been struck off their lists. This can mean that patients are labelled as 'difficult' and find it hard to enlist with another doctor. This is something we must tackle. Let us know if it has happened to you. Access to GPs The other ongoing GP problem is over access. Patient Concern spent two years fighting the system where GP practices, chasing the 24 hour target, refused to allow booking of advance appointments. We were instrumental in changing the system in a number of surgeries long before the problem hit the headlines. Things have improved, with most surgeries now maintaining that they allow advance appointments up to three weeks ahead. However, many patients tell us that this is something of a sham, with so few advance appointments available that it is still almost impossible to see the doctor of their choice. We have met with the Department of Health on the subject and they are determined that this must stop. Keep us in the picture on what is happening in your area and we will pass it on. [home] [about us] [campaigns] [publications] [whats new] [contact us]

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