Untitled Document

Support the nurse whistle-blower

Margaret Haywood 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. An appeal against the sentence has been lodged with the High Court and we are still waiting for this to be heard.

In the meantime she has been nominated as Patients' Choice Nurse of the Year in the prestigious Nursing Standard Nurse of the Year Awards, which will be presented at a ceremony on November 9. If you would like to vote for Margaret and let the NMC know that they are out of touch with patients' wishes, use this link:

http://nurseawards.rcnpublishing.co.uk/patientschoicepack.asp

It is true that technically Margaret was guilty of breaking patient confidentiality and a disciplinary slap on the wrist would have been appropriate – together with congratulations for being willing to put her career on the line to protect patients. Instead the NMC has chosen to send out the message that nurses who see appalling conditions day in, day out, and find the management ignores their concerns, should keep quiet about it. If they don't they will get the chop.

We are still asking you to sign the petition drawn up by the Royal College of Nursing:

http://www.gopetition.com/online/27030.html

Are you complaining?

The Department of Health has changed the complaints system yet again. From April 1 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 will be 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 already hearing that the Ombudsman's office is inundated with complaints and finding it difficult to cope with the numbers.

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.

Electronic records: do you consent?

The next wave of pilots for the electronic data base for medical records is taking place this year. Patients in pilot areas will get a letter saying that the basic information about their current prescriptions, allergies and previous bad reactions to medication is about to be uploaded to the electronic data base. This is called the 'summary care record'.

Once this letter has been sent you will have to notify your GP if you want to opt out of the system. If you do not do so within sixteen weeks (in the first pilot it was eight weeks) your consent is assumed and your record will be uploaded.

Even if you do opt out all your 'demographic' details, including name, address, date of birth, phone number (even if ex-directory) and e-mail address will still be listed. .

This goes against all the rules of informed consent and patient confidentiality. Patient Concern has insisted from the first that every patient should be sent a copy of the details that will be uploaded about them and asked for explicit consent before this happens, but the organisers, NHS Connecting for Health, set their faces against this - too expensive, too slow, too much trouble!

At first, the only real concession for patients was that they could opt out. Unfortunately for CFH, an evaluation carried out by University College London showed that, in spite of letters going to every household, the majority of patients knew nothing about what was happening, or did not understand it - just as we had warned them at the beginning. By this time, of course, hundreds of thousands of records had already been uploaded.

They have come up with a new plan. Patients will be given three options:

Say no: no medical record uploaded, though all the demographic information will still be there.

Say yes: record uploaded and can be seen by all those with access.

Ask me first: record uploaded but (except in emergency) staff must ask your permission to view.

Anyone who does not register a choice, for whatever reason, will be put into the 'ask me first' system. They then have the option of agreeing or refusing to have it viewed or having it removed at a later date.

This is an improvement but it still means that data will be uploaded without consent .

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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				To read our press releases on these and other subjects click here 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





				Support the nurse whistle-blower Margaret Haywood 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. An appeal against the sentence has been lodged with the High Court and we are still waiting for this to be heard. In the meantime she has been nominated as Patients' Choice Nurse of the Year in the prestigious Nursing Standard Nurse of the Year Awards, which will be presented at a ceremony on November 9. If you would like to vote for Margaret and let the NMC know that they are out of touch with patients' wishes, use this link: http://nurseawards.rcnpublishing.co.uk/patientschoicepack.asp It is true that technically Margaret was guilty of breaking patient confidentiality and a disciplinary slap on the wrist would have been appropriate – together with congratulations for being willing to put her career on the line to protect patients. Instead the NMC has chosen to send out the message that nurses who see appalling conditions day in, day out, and find the management ignores their concerns, should keep quiet about it. If they don't they will get the chop. We are still asking you to sign the petition drawn up by the Royal College of Nursing: http://www.gopetition.com/online/27030.html Are you complaining? The Department of Health has changed the complaints system yet again. From April 1 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 will be 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 already hearing that the Ombudsman's office is inundated with complaints and finding it difficult to cope with the numbers. 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. Electronic records: do you consent? The next wave of pilots for the electronic data base for medical records is taking place this year. Patients in pilot areas will get a letter saying that the basic information about their current prescriptions, allergies and previous bad reactions to medication is about to be uploaded to the electronic data base. This is called the 'summary care record'. Once this letter has been sent you will have to notify your GP if you want to opt out of the system. If you do not do so within sixteen weeks (in the first pilot it was eight weeks) your consent is assumed and your record will be uploaded. Even if you do opt out all your 'demographic' details, including name, address, date of birth, phone number (even if ex-directory) and e-mail address will still be listed. . This goes against all the rules of informed consent and patient confidentiality. Patient Concern has insisted from the first that every patient should be sent a copy of the details that will be uploaded about them and asked for explicit consent before this happens, but the organisers, NHS Connecting for Health, set their faces against this - too expensive, too slow, too much trouble! At first, the only real concession for patients was that they could opt out. Unfortunately for CFH, an evaluation carried out by University College London showed that, in spite of letters going to every household, the majority of patients knew nothing about what was happening, or did not understand it - just as we had warned them at the beginning. By this time, of course, hundreds of thousands of records had already been uploaded. They have come up with a new plan. Patients will be given three options: Say no: no medical record uploaded, though all the demographic information will still be there. Say yes: record uploaded and can be seen by all those with access. Ask me first: record uploaded but (except in emergency) staff must ask your permission to view. Anyone who does not register a choice, for whatever reason, will be put into the 'ask me first' system. They then have the option of agreeing or refusing to have it viewed or having it removed at a later date. This is an improvement but it still means that data will be uploaded without consent . 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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