A target-driven, incentive approach does not necessarily produce the desired or even desirable outcomes. In the field of clinical governance, those outcomes, as we well know from the experience of Mid-Staffs, may prove to be calamitous and catastrophic.
This is the Brighton & Hove EoLC LESS (End of Life Care Locally Enhanced Services Specification) -
The GSF audit submitted by GPs gives a clear indication as to how we are performing in Brighton and Hove enabling us to concentrate on areas that need improvement in subsequent years. Implementing the Gold Standard in Palliative Care meets targets in the NHS Cancer Plan, the NHS Plan, the NICE guidance for Palliative Care and audacious goals set by NHS Sussex to reduce admissions by 15% by 2013. It is supported locally by the Macmillan Community Team and Integrated Primary Care Teams who attend practice meetings where possible. The Specialist Palliative Care Consultants have also agreed to support practice-based learning and critical event analysis.This is also referred to as the End of Life Care LESS!
GPs are collecting their 1% using the GSF Prognostic Indicator as guidance -
Macmillan and IPC Teams have agreed to support practice-based learning and Critical Event analysis...
and assist in the grooming process to downsize care expectations to realise the Sussex 'Audacious Goals'!
The audits are in place...
Audit and Verification
Audit report forms, showing the evidence required to achieve each indicator, are published annually on the PCT’s Health Professionals’ website.
Payments: A total of 16 points are available, at the same value as QOF organisational points for each practice.
Significant changes have been made to the distribution of points: please read the table below carefully, as some activity will need to start on 1 April 2012.
The target-based CQUINS are set...
1 point Reporting on the number of deaths and the number of patients on the practice palliative care register between 1 April 2012 and 31st March 2013. 7 points Completing an after death review for every patient on the palliative care register who dies between 1 April 2012 and 31 March 2013, and reviewing all deaths to assess whether others could have benefited from inclusion on the register. For patients whose usual residence is a care home with nursing, a member of the care home staff should be invited to attend the after death review meeting regardless of place of death. 1.5 points1 point Educational meetings:Attendance by at least 1 GP from each Practice at one of two training sessions for bereavement, and evidence of a meeting to cascade learning from this training to others in the practice.Attendance by a practice team member at 2 further educational meetings relevant to care offered to palliative patients by the practice, and evidence of a meeting to cascade the learning points to the rest of the team. 4 points Advance Care PlanningEnsuring all patients on the Palliative care register are given information about advance care planning unless this is specifically refused by the patient. The Practice should complete a summary at the end of the year outlining the work in the practice to increase uptake and completion of advance care planning documents by patients. 1.5 point Ensuring that out of hours palliative care handover forms are shared with out of hours and ambulance service, for all patients on the palliative care register, and these organisations are notified of the patients death.
Audits should be submitted to the Enhanced Service mailbox at:
Providing that practices are achieving or aspiring to QOF indicators PC1 and PC2, payments will be per point achieved. Practices may pick and mix achievement against indicators as they choose. The value of each point will be the as each practice’s points within the Organisational Domain of the QOF.
Specification & design review group
Anthony Flint – Commissioning Manager
Nicky Daborn - Palliative Care Facilitator
Dr Christa Beesley – Clinical Lead Palliative care
Brighton & Hove have been the subject of a pilot.
The ambulance is summoned.
Ambulance staff access the Care LESS.
GP service is contacted.
Home palliative care team responds.
5.2 Concerns about the register
Throughout the pilots it has frequently been highlighted that it is very important to choose an appropriate name for the register. The name of the register can have a significant impact on the ease with which the sensitive conversations surrounding the register can be broached. Whereas the term ‘end of life register’ may be upsetting for some patients, a more subtle name can not only soften any negative connotations associated with consenting to the register but also help to communicate the benefits that consenting to the register presents. For example, at the time of writing the pan-London group had provisionally agreed to use the name ‘Co-ordinate my Care’ for their end-of-life care register. This name is not only sensitive to the distress that the register may cause patients but also immediately indicates to patients that the register has a purpose which is directly beneficial to their care.
A sub-set of these concerns is the potential cultural and religious sensitivities around the subject of death and whether any particular cultural groups may have objections to joining the register, and why.
The Brighton & Hove pilot.
7a) NHS Brighton & Hove
Summary of development of the pilot
- NHS Brighton and Hove chose to combine their locality register with the launch of the Summary Care Record (SCR). This would work by having the End of Life Care plan enriched onto the SCR, which would then be accessible to staff in those clinical settings which had SCR access.
- Due to the delay in the roll out of the SCR, which followed concerns with regard to the opt-out consent model and the subsequent national review, the pilot was severely delayed as progress could not be made until the issues with the SCR itself had been resolved.
- Consent has been a difficult issue for the SCR as a whole, and therefore for the Brighton pilot. Now that the SCR programme has been reviewed and its continued roll out confirmed, it has been agreed that an opt-out approach for the core data of the SCR together with an opt-in approach for any enrichment of the SCR (including EoLC) will be acceptable to clinicians. The added patient control of providing additional consent for staff to view in all clinical settings will be established also as part of the SCR guidance.
- The functionality of the SCR does not, however, allow reporting. The SCR was designed to be a clinical information tool with strong access controls to increase patient confidence in.data confidentiality. The PCT remain keen to find a way to use the data the register will collect to be able to report on EoLC within the PCT, although no steps have been taken yet to begin addressing this.
- Due to the delays encountered in the roll-out of the SCR and the subsequent delays in the Brighton and Hove pilot, stakeholder engagement was postponed. This was in order to align the pilot development appropriately with the SCR rollout, and the necessity of uploading a critical mass of patient records to SCR to create engagement from those clinicians who will be accessing the SCR record.
At the time of application to become a pilot site, a manual system to share information about palliative care patients was in operation between End of Life Care services, ambulance services and GP practices. The provider of out of hours services for the PCT, South East Health, used an Advanced Health & Care (formally known as Adastra) based IT system. When patients were identified as palliative care patients by the GP the relevant paperwork was faxed through to South East Health, where a physical copy of the information was stored. A flag was added to the patient’s record on the Advanced Health & Care system in order to indicate to out of hours services that palliative care information was available for that patient. This then prompted the member of staff to look for the palliative care copy of the handover form stored by South East Health.
This system only allowed the sharing of faxed information between GPs, district nurses, ambulance and out of hours services. NHS South East Coast had a web-based system to share information between their service and GP practices, but it would still not have given the full electronic transfer and data share capability envisaged by the pilot for the locality register.
NHS Brighton and Hove originally proposed working in partnership to fund the South East Health independent web-based system (Share My Care) which would not be exclusive to a particular IT platform, such as Advanced Health & Care or SystmOne. However, with the launch of the Summary Care Record (SCR) coinciding with the development of the pilot, NHS Brighton and Hove instead planned to incorporate the functionality of their locality register with the SCR. It was decided that an EoLC register linked to the SCR platform would fit best with the strategic objectives of the Trust, especially as it is one of the “fast followers” of the SCR.
Originally, one of the key features of the register was the roll-out of information sharing to a greater number of services, with the plan being for GP practices, district nurses, community specialist palliative care teams, the acute sector, the hospice and the ambulance service all to have access to the data via an electronic solution. The cohort of patients for the pilot was to be those already on local GP practice palliative care registers, with the potential to roll this out further as new EOL patients in the community are identified.
The Brighton and Hove pilot therefore plans to provide an enriched data record on the SCR for those patients identified as palliative care patients. A flagging system would need to be incorporated on the accessing service’s patient administration system to show whether or not EOL enriched information is available for the patient on the SCR. The SCR does not currently support the inclusion of such a flag, meaning that each patient’s SCR record will have to be checked manually for enrichment additions and to confirm the data is stored on the register.
At the time of writing, Brighton and Hove had not yet advanced to a ‘live’ stage.
Aims and Objectives
The principle aim of the Brighton and Hove EoLC register pilot is to ensure that a record of a patient’s wishes in relation to EoLC and patient medical information is available to all healthcare professionals involved in their care, regardless of the time of day, setting of care or patient diagnosis. The objectives identified by Brighton and Hove in order to achieve this include:
- The availability of palliative care handover information 24 hours a day on an enriched SCR;
- The availability of information into secondary care where patients attend A&E or are admitted to secondary care;
- Sharing of information from GPs and community nurses to a managed register with the appropriate governance checks in place;
- An audit trail to ensure appropriate access and confidentiality; and
- Improved recording of data to inform the commissioning of services for patients at the end of life.
Fitting the locality register in with the broader strategic objectives of the Trust is very important for NHS Brighton and Hove. The Trust decided, with the SCR being rolled out across the SHA, that the register would fit best within that.
Technical and IT developments
The technology platform for the Brighton register is an enriched record stored within the SCR. Because of this there has been little specific development of a technology platform within Brighton and Hove, as this is managed by Connecting for Health.
Whereas other pilot sites have had to create only one template data set, because of the overarching nature of the Brighton and Hove technology platform, which sits within different sites with different GP clinical IT systems (such as EMIS, SystmOne, iSoft or Vision) Brighton and Hove have had to create a different template for several of these IT systems.
Each of these templates is designed to collect the same data based on the minimum data set agreed by the Department of Health and the national pilot site steering committee. However, each template itself must be created for each of the GP clinical systems and loaded to the practice with that IT system in place. The pilot’s aspiration is that the templates will in the future be developed for each of the systems and made available by each relevant GP clinical IT provider, as iSoft has already done. This will avoid the need for other PCTs to create their own similar templates and will ensure that they are all compliant with the minimum data set.
In order to assist GP practices to record the required EoLC dataset agreed on within the pilot, templates for each GP IT clinical systems need to be created. Brighton and Hove Locality register project lead
Development and implementation
As the Brighton and Hove system is based around an IT system that is being rolled out nationally, the training is to be provided by the team responsible for the local launch of the SCR. This includes training to enrich the SCR records, where this function is available, such as for EoLC. There is an aspiration to link this training with specific training around the register, but this has not been addressed as yet.
Using a national system to implement the register reduces ongoing training costs. As clinicians move from one area to another, they should all still be familiar with the SCR and the basic functions.
Clinicians will get used to the Summary Care Record wherever they’re working. Those who have worked in other areas which have rolled out the Summary Care Record, could come into our area and already be familiar with the use of SCR Brighton and Hove Locality register project lead
At this stage of the Brighton and Hove pilot there has not yet been a chance to explore the need for GP training in the communications side of using the register (for example having discussions with patients about joining the register). There is currently no evidence of the level of GP uptake of the register and their willingness and ability to have conversations with patients to obtain their consent to join the register.
As the Brighton and Hove pilot has not yet advanced to a ‘live’ stage, there has not been a great deal of discussion so far around the issue of administration rights for the register. These will largely be determined by the national administration rights policy for the SCR, giving the GP sole right to create and edit records on the register.
However the question of administration rights is recognised as an issue within the Trust. GPs are concerned about the extra responsibility for the ownership of the record, particularly for data which will be used by healthcare professionals from outside the practice.
It’s also about data quality, and the extra responsibility of being responsible for data that is being used by other people, rather than just people in the practice. The data enriched onto the patient’s SCR must be accurate and up to date. Brighton and Hove Locality register project lead
Addressing GPs’ concerns regarding administration rights will be important to ensuring their longer-term buy-in to the register.
Patient consent is an important issue for Brighton and Hove in the development of their register. Issues around consent have now largely been addressed. It has been agreed following the national review and continuation of the SCR that an opt-out approach for core data together with an opt-in approach for enriching the SCR will be acceptable to clinicians. The added patient control of permission to view in all clinical settings is built into the SCR guidance.
Initially, GPs in the Brighton and Hove area were uneasy about the opt-out model of consent for the SCR, with concern being expressed that opt-out consent did not constitute informed consent. The opt-out consent model was supported by a campaign to inform patients.
They were sent letters supported by local information campaigns and a national helpline which includes language translation and text phone services. Those patients who had not or could not read the letter sent to them with information about the SCR and the consent process would be at a disadvantage and unable to decide in an informed way whether or not they wanted an SCR.
Some GPs didn’t believe that all patients had been properly informed, just because they’d received letters, Brighton and Hove Locality register project leadA member of the Connecting for Health team who has worked closely on the development of the SCR feels that although the burden on the patient should be minimised if they do not want to take part, inclusion on the SCR can be a real benefit to patients, with further benefits being realised for those patients who will be provided with enriched records. Therefore consent to the SCR is also something that GPs may at their discretion choose to discuss with those patients where they think the greatest patient care benefits will be realised.
DH has made the process to opt out of the SCR easy and simple for patients. Patients may not understand that there may be benefits to having an SCR and that is why some GPs like to talk to patients where they think there will be a huge benefit to the patient. NHS Connecting for Health representative
Although it was never intended to include an explicit opt in consent stage for the creation of any enrichment to areas of the SCR above the core dataset, concerns about the consent process for the SCR as a whole were addressed by a Ministerial Review which concluded in October, which impacted implementation of the SCR.
This resulted in severe delays to the Brighton and Hove pilot, which is reliant on the SCR to be able to go live. The consent issue for the SCR has now been resolved with explicit opt-in consent for enriched patient records being standard.
Core information for the Summary Care Record is uploaded following an implied consent model, if patients want their records further enriched, then that will be following patient explicit consent Brighton and Hove Locality register project leadAs well as consent to have data stored on the register, a further aspect is permission for other healthcare professionals to view the patient record. Where possible, permission should be gained from the patient, relative or carer before each viewing of the data in the SCR. Patients in the Brighton and Hove PCT area have been particularly positive about their permission for this being sought as it allows them to control who views their record dependent on the service setting or situation. Data is not indiscriminately available and this also obliges clinicians to think carefully about whether they need to view the data, rather than simply looking at all the available data. Control of the data is thus in the hands of the patient to a large extent.
Permission to view doesn’t have to mean ‘yes’ in every care setting, and in Brighton they quite like that control NHS South East Coast CfH representativeFunctionality
One of the benefits of basing the locality register within the SCR is that this reduces
duplication of information. When changes are made to the GP system these changes will
also be reflected in the core data set. This automatically updates information such as the
current medications and dosage taken by a patient. Any information pertaining to the EoLC
enriched record can also be transferred through to the SCR section without requiring the GP
to re-enter information.
An advantage of the Summary Care Record is that when changes to the medication are made on the GP system it will automatically be available on the Summary Care RecordHowever, as the SCR was designed as a clinical data management tool rather than for the specific purpose of hosting an EoLC register, there are some limitations in its functionality.
Brighton and Hove Locality register project lead
One of the main drawbacks to using the SCR to provide enriched records such as the EoLC register is that the existence of the register cannot currently be flagged from the core data of the SCR. This means that each patient’s SCR will have to be checked for enrichment additions and to confirm that this data is stored on the register.
The SCR also lacks a reporting function, so each GP practice has to run a search for its own data and then produce a report. As with many of the pilot sites, Brighton and Hove, prior to deciding to link the register to the SCR, hoped to use the data collected in the development of the register to proactively monitor EoLC within the PCT. As mentioned earlier, the SCR does not currently have this functionality.
You can’t pull reports off the Summary Care Record, so that’s another problem … Any data extractions required would need to be run on each of the GP practices’ clinical systems Brighton and Hove Locality register project leadThe SCR was deliberately designed without a reporting function. It was felt that restricting the ability of individuals outside the practice to extract the data would be reassuring for patients. Given the function of the SCR as a clinical information tool for a basic core data set, the form fits the function of the system in that it aims to encourage maximum buy-in from patients by minimising their concerns about data security.
The SCR was designed to be a clinical information tool with strong access controls to increase patient confidence in data confidentiality.Brighton and Hove are keen to ensure a way to enable EoLC reporting information to be extracted from the clinical GP IT systems. No steps have been taken yet towards completing this work.
NHS Connecting for Health representative
Impact on inter-agency partnership and working
Given the stage the Brighton and Hove pilot site are currently at, it is not possible to fully ascertain the affect that the pilot has had on interagency working. However, it is expected that the improvement in data sharing will naturally lead to an increase in, and improvement of, interagency working, with emergency and out of hours in particular benefitting by having access to all of the relevant information for patients from the site of care.
If the information sharing is improved, we’re not going to get into these situations where an end of life patient gets admitted into hospital and they didn’t want to beStakeholder Engagement
Brighton and Hove Locality register project lead
Stakeholder engagement has been another key challenge. In part this is because of the concerns that GPs have had about the patient consent model for the SCR and the potential increase in their own workload. The pilot team feels that the amount of work required to ensure the success of the pilot through stakeholder engagement has been underestimated.
[We] didn’t realise that it was going to be so hard to engage the practicesThis was echoed to some extent by the Connecting for Health lead who explained that the slow process with limited immediate benefits could lead to disengagement of GPs. Getting a ‘critical mass’ of patients onto the SCR so that improvements to the patients’ experience and reductions in the administrative burden on GPs can been seen more easily is something that needs to be achieved in the early stages of the project.
Brighton and Hove Locality register project lead
If they don’t see any benefit you quickly get disengagement … this is why for the Summary Care Record critical mass is very important NHS Connecting for Health representativeMaking sure stakeholders are engaged is felt to be one of the most important lessons learned according to the Brighton and Hove pilot lead. Finding ways to incentivise GPs to enrich the SCR may need to be considered.
One of the lessons we really learnt from it was that you’ve got to make sure your practices are fully engaged…And it might be that PCTs need to think through how the extra work generated by participating in SCR will be managed by the practice Brighton and Hove Locality register project leadService user, carer and family experience
As the Brighton and Hove register itself has not been launched at this stage, there is currently little information available on how the patient and carer experience is affected. The aspiration is that the register will:
- Reduce inappropriate hospital admissions;
- Assist people to achieve their preferred place of care; and
- Provide patients with a more joined up service, where information is available to all involved in the patient’s care.
There are also some issues that the project team have identified, most importantly the need for flexibility in the register to allow patients to update the information held about them. There is recognition that patients do often change their wishes, and is necessary to make sure the system remains flexible enough to allow healthcare professionals to use their judgement to best reflect the wishes of the patient at the time.
They do change their opinions about where they want to die and the effects it has on their families.Conclusions
Brighton and Hove Locality register project lead
Key learning points
- Whilst ‘piggybacking’ on a national initiative does have many advantages, the pilot itself is subject to the progress made by the national development. Brighton and Hove did not foresee the delay with the SCR and therefore had trouble maintaining engagement with stakeholders.
- Being tied to a nationally developed product, Brighton and Hove PCT could not influence the functionality of the SCR. They are therefore unable to run reports or create flags indicating the presence of an EoLC enriched record outside of the SCR, so clinicians must check for the record to see if it exists. Locally customised solutions have been able to mould the register to reflect the function that they would find most useful.
- Positively, using a nationally based record system has meant that Brighton and Hove have a system clinicians will be familiar with and will not need specific training to use. This will also help to ensure that clinicians develop a culture of using the SCR both in terms of adding information to it and in terms of seeking information from it.