This webpage explains what the NHS’s Advocacy Plus Pilot is FOR, and who is delivering it for the two companies involved – CASCAIDr Trading Ltd, and Imagineer. Click on any of the links to questions that you’d like the answers to…
What is your view on the suggestion in the CTR policy that “A review cannot take place without the consent of individuals with capacity, or if they lack capacity [without] a Best Interests decision being taken on their behalf and formally documented to that effect?”
If someone has got capacity and is consenting to information sharing, but not to their family members, (assuming there is no welfare power of attorney or deputy) will they be able to benefit from the pilot?
Who are CASCAIDr Trading Ltd., and what is the company’s role in the Advocacy PLUS Pilots?
CASCAIDr Trading Ltd is the trading company arm to a charity called CASCAIDr. CASCAIDr is a provider of specialist legal advice regarding people’s rights to adult social care and health care under the law in England. Its Trading Company exists to support its viability and it has been selected to operate under contract to NHSE/I, as legal framework experts – within the context of the Advocacy ‘Plus’ pilots.
The pilots are for exploring the value of legally literate support in the context of CTRs and Support Planning for people with Learning Disability and Autism.
CASCAIDr Trading is providing consultancy and advice as to people’s rights and remedies, and about public bodies’ obligations and discretionary powers under statutes, regulations and public law, in the context of CTRs and CETRs for long-term and segregated patients, and regarding s117 Mental Health Act or other care planning, for patients who are approaching discharge.
Can we describe you as ‘advocates’ when getting consent or considering capacity to consent to your involvement in the person’s CTR?
When commissioners and hospital staff are considering a patient for the pilot, and thus exploring capacity around information sharing,, or seeking consent from the patients for disclosure of their sensitive personal ‘special category’ data to us, it should be remembered that we are outsiders to the NHS.
We ought not to be described as advocates for the individual and/or their family, because we are not IMHAs, and we are not there to replace IMHAs. We are not commissioned to provide instructed or non-instructed advocacy under statute.
We are not advising on rights to discharge and how to get a Tribunal hearing, or organising legal aid / mental health specialist law firms for these patients. Those who want help in this regard from an IMHA should have their IMHA rights respected, separately.
We’re expert in the legal framework related to the Care Act, the Mental Health Act, Human Rights Act, Mental Capacity Act, the Housing Act, the NHS’s continuing health care National Framework and (to a lesser extent) the Children Act and special educational needs rights under the Children and Families’ Act.
The laws we’ll be referencing, for everyone’s benefit, from the list above, all have human rights and public law principles woven into and underpinning them – as does all the good practice guidance that informs and fleshes out the law in all of those Acts. That’s why there’s still a point to our involvement, even if the person has got a mental health solicitor or an IMHA, supporting them already with Tribunal or Managers’ hearings about discharge.
The idea is that this sort of expertise will assist professionals to cut through hours of debate about what might be done, in a likely vacuum of unawareness of the legal framework, and narrow it down to what cannot be done and what must be done, and by whom, and by when, or why not, if judicial review, serious risk of other civil forms of redress or broader reputational damage are all to be avoided.
Is there an Easy Read version for what we can explore with the patients?
Involvement, in person, in the CTR
Do you want to be at the CTR and meet the people called the Panel, and be involved in there, on the day?
You need to understand that you don’t have to go and be involved, but that people will be talking about how you’re doing.
So you might want to hear about it and tell people about what matters most to you, or have an advocate speak for you?
If you say no, we’ll go with along with that, but the CTR most likely needs to go ahead anyway, because it’s the best possible chance of all the people who care about you getting their thinking together, to work out what would make things better.
Does that make sense to you? What do you think about that please? Would you like to be involved on the day, or not, please?
Sharing information about yourself, and talking about it with CASCAIDr
There’s going to be some people there, who haven’t been there at your CTRs, before.
They’re called CASCAIDr – the person from there might be a man or a woman.
These people are LIKE advocates, but they know more about the law – for instance, about the rules saying what the hospital, the NHS, and the council, should all be doing, to help you [whichever is applicable to the person’s situation] join the ward again / leave the hospital / live in the outside world.
You don’t HAVE to speak to the CASCAIDr person, but they are completely independent of everyone else – and that might be better for you than your previous experience of having an advocate’s help?
If you say no, we’ll go along with that – the person who’s like an advocate will probably still be there, at the CTR, and available to speak with you privately, if you change your mind. It’s up to you.
Does that make sense to you? What do you think about that please? Would you like to say yes, or no?
CASCAIDr’s input with your family – how do you feel about their people discussing information about you, with your family?
This CASCAIDr person – who’s like an advocate, and completely independent, and on top of all the rules, could speak to your family about how what your family thinks, about how you’re doing and the plans being made for the future – but that’s up to you.
Your family might be able to help you more, if they knew a bit more about the law about care planning, and this person can answer questions.
But you don’t have to give permission, if you don’t want that to happen.
If you say no, we’ll go along with that unless the NHS thinks it’s really important that your family is there, and invites them to the CTR anyway, of course, in which case the CASCAIDr person might speak to them about the rules covering your sort of situation.
Does that make sense to you? What do you think about that, please? Would you like to say yes, or no?
Are there any Easy Read Materials for this capacity/consent/information sharing issue?
We’re not personally convinced that pictures/drawings would help the patient with this very conceptual question of their ‘information’ and what might or might not be done with it, and why? We’ve not seen any examples that deal with information sharing in pictures, but have put some resources up here although they go wider than information sharing or just focus on it from the perspective of Safeguarding, which is not directly in play in this project.
We think this one by the NHS itself, regarding youth rights, is not intended for people with cognitive impairment but it does mention information sharing a little: https://www.england.nhs.uk/wp-content/uploads/2015/08/youth-rights-in-hlthcr-er.pdf
This one on the Mental Capacity Act does convey that the people needing to MAKE the decision (here, the professionals giving the information away, to us, and putting the person in touch with us) do need to understand the issue in order to convey the information in the first place: https://www.careengland.org.uk/sites/careengland/files/Mental%20Capacity%20Act%202005%20easy%20read%20guide.pdf
https://www.scie.org.uk/safeguarding/adults/practice/sharing-information from SCIE is all about sharing information without a person’s consent but it is in the context of safeguarding information which is not the context applicable to the issue arising, in this project – not directly, in any event.
Finally there’s a couple of sheets attempting to explain confidentiality for those with mental illness here, but it’s not Easy Read – it’s just basic and not fully comprehensive, in our view. https://www.rethink.org/advice-and-information/rights-restrictions/rights-and-restrictions/confidentiality/
– and for relatives of anyone about whom the data has been collected, here: https://www.mindcharity.co.uk/wp-content/uploads/2015/10/Confidentiality-Information-Sharing.pdf
Our point is that this task is for those closest to the patient, and not CASCAIDr’s legal responsibility. Our part is in assuring information controllers / keepers that we, as the entity receiving the information understand that we are receiving it in confidence, and will respect this.
What are the minimum logistics arrangements that need to be made for the NHSE/I funded pilot project ?
a) Date, time, mode of participation in the CTR (eg Teams) conveyed to email@example.com as soon as the date and time are known.
b) Breakout rooms in Microsoft Teams, could be good, so the Panel have room for smaller or private meetings and to review paperwork and we can be invited in and out of those rooms if we have the need, with the patient or the family.
We’ll be expecting to be present throughout a CTR, for the sake of contributing to any gaps in people’s knowledge regarding the minimum rules for the whole process being lawful and the coverage being what is required for public law purposes, and we can be used as a resource for the integrity and effectiveness of the review and the professionals’ input and discussion itself, because of our expertise. We hope to be seen as a critical friend to the process. We would not want merely an ‘advocate’s slot’, separate from the rest of the professionals who are considering the patient’s documentation, because we are not an advocate in the normal sense. We could be seen as Other Key Professionals for scheduling purposes along with the clinical, nursing, psychology, OT or social work staff.
c) Lee Forster Lee.firstname.lastname@example.org needs at least three options for sessions set up for prior discussion with the patient after he or she has consented to our receiving information or they are regarded as lacking capacity and in either case, with documented evidence of a lawful processing decision having been made by an information holder.
d) We need documentation however brief it might be, that the question of consent to our involvement, or a decision as to incapacity (and in the case of refusal or incapacity, a decision as to whether the data should be shared anyway under the auspices of necessity for statutory functions) has been properly recorded by CCG commissioners and hospitals, working together in advance.
Who should be doing the administration and co-ordination of the CTR?
“Where possible, a designated administrator (within the provider organisation, the CCG) should be identified who can ensure timely and thorough coordination, forward planning and communication for CTRs.“ (CTR policy 2017)
“The service provider must ensure that all relevant information is provided at the beginning of the day and where possible in a format that is clear to all the team.” (CTR policy 2017)
CASCAIDr has not been commissioned to discharge that role and is dependent on receiving the pen portrait and the other information we have requested.
CTR policy says that “It is the role of the Transforming Care regional leads and their nominated directors to ensure the implementation of this policy.”
Timing: why do you need the patient’s information so much earlier than it would normally be assembled?
We need the basic pen pictures referenced in CTR policy and guidance, of any patient intended for inclusion in the pilot at least 10 working days before the date set for the CTR, once it HAS BEEN SET, and preferably longer.
We appreciate that providers and commissioners may not be used to organising this assemblage so early, and that the focus of CTR policy is for information provision on the day or only shortly beforehand and for destruction afterwards, to minimise information loss or misuse. But CTR policy does not envisage the input of outsiders to the process such as we are.
That requirement of information disclosure 10 days in advance of a set CTR date is so we can do the necessary legal analysis and have at least a chance of getting online with the person and the family members, on days which someone from OUR pool of contractors and family liaison contractors can manage, when the individual patients concerned are also well enough and available to engage online.
So, sharing the schedule of CTR dates which all patients intended for inclusion have next been allocated, or are about to be allocated, with us, is all important, for working back 10 days for provision of at least basic information that we will use for matching our contractors to the people in question. For instance, we have contractors with forensic / personality disorder patient experience, LD/Autism with or without mental illness / psychosis issues on top, and we want wherever possible to make a rational allocation, given experience and expertise.
The run-in time will also help identify when particular patients maybe need to be steered towards Imagineer for care planning/support brokerage, rather than the sort of legal input AT a CTR that CASCAIDr is commissioned to provide. If that is the case, then we need at least this much time to be able to support Imagineer with the legal framework for all the issues that they may have to consider, in order to move the person’s progress towards discharge, on, in the time available.
We will always want to speak to the Commissioners as soon as we have had a chance to look at the patient information – in case placing the apparent features of the case within the legal framework in which we are expert assists in identifying the need for specific aspects of professional insight to be available at the CTR.
If this run-up time requirement is not respected, the CTR will either have to go ahead without our input, or will have to be put back. Those eventualities – ie our not being in situ, or the date having to be put back, will only elicit poor feedback for the pilot, and raise further barriers to legal literacy being regarded as a welcome addition to the mix of skills and knowledge at a CTR.
What information will be needed for the CASCAIDr contracted Legal Framework Expert?
We have asked all the commissioners with whom we have been put in touch, for the following information, as a start, in writing on secure nhs.net email:
The patient’s name, age, status (detained under the MHA, under which section?) any significant others’ relationships, area of the country the patient came from, conditions of any court order for non-return to any other area if the patient is a restricted patient, their mental capacity in general (moderately impaired, significantly impaired, any specific communication difficulties?), any specific diagnosis, any tendencies when distressed etc.
We appreciate that relationships with every single provider and within each of the CCGs in the London NHS region, will be operating in different ways, and that we cannot assume that commissioners will have ‘rich’ up-to-date knowledge of the patients in question. We need to know urgently in any given case where we can get that knowledge from, and be put in touch with the person in question.
Every patient will have a Care and Treatment Plan, in theory, and we require sight of the most recent one, too, even if not at the very outset of proposing a patient for the pilot.
CTR policy envisages the Panel being given “a preliminary shared knowledge of the person being reviewed. This will be facilitated by the provision of a one-page-profile or similar ‘pen portrait’ “
That pen portrait is a good start.
There will be further specific information that would be important – eg if the person is a child, do they have an EHCP or a prior Care Act plan, if an adult?
We need their KLOE documentation, from their last CTR process, where relevant.
CTR policy 2017 says “The CTR panel should be provided with findings and report from any previous CTR.”
We need to know whether the person has had prior CTRs because subsequent CTRs may not need the same amount of time as they will be reviewing the previous CTR outcomes and recommendations and may focus on specific areas of concern e.g. barriers to progress. This helps us allocate a contractor, cost-effectively.
In what circumstances should commissioners ensure that an IMHA is also available?
The pilot is for the benefit of people who have either not been aware of, declined, not been able to work with, or not been satisfied with statutory advocacy.
But Advocacy PLUS is not a replacement for or any species of statutory advocacy, and we’re not describing ourselves as advocates. We are legal framework experts, and we are independent – not commissioned BY CCGs, NOR by local authorities responsible for commissioning IMHA advocacy for the area, nor discharging functions that are solely the functions of CCGs or councils.
We are NOT mental health Tribunal rights lawyers or experts. Not having an IMHA is not part of the criteria for including a person in the pilot.
If a person is lacking in capacity to consent to being involved or to involving US, or positively refuses our involvement for their own benefit, with capacity, but we are still wanted at the CTR, then it is our view from a legal perspective that they NEED to be given the chance to be supported by someone who is an IMHA. That would enable the IMHA can then do what IMHAs are supposed to do – which is give information about rights to a Tribunal, to the individual or to any other representatives of the person in question, with whom the IMHA can lawfully share information, if there are any of those.
The 2019 addendum says this should be done as a matter of course: “Set up meeting times with professionals to maximise participation; likewise, with families unless they wish to participate throughout. If the person lacks capacity to consent, then their advocate must attend.“
The Mental Health Act Code of Practice says this: “If a patient lacks capacity to decide whether or not to obtain help from an IMHA, the hospital manager should ask an IMHA to attend the patient so that the IMHA can explain what they can offer to the patient directly.”
“A patient, and persons supporting them (eg a patient’s nearest relative, family, carer, advocate or legal representative), especially a patient lacking capacity, must be supported to make a complaint if they think the safeguards of the Act are not being appropriately applied or they have concerns about the care and treatment being provided.“
“Staff should be aware that it can be particularly difficult for patients and those supporting them to take forward complaints due to their mental ill-health and fear that this may impact on the quality of care and support they receive. All efforts must be made to support patients (especially those lacking capacity) and those supporting them to make complaints without any negative impact on the quality of care and support provided.”
In a case where the person is a child under 16, and the parent has parental responsibility, a further problem arises which was not foreseen at the point when the project was assumed to be for those 16 and OVER. In the situation where the rights of an autistic child may well conflict with the rights and interests of the parent and/or other children, safeguarding, the child protection framework and Children’s services, the parent might be the only route through which we could advise as to the child’s rights to children’s services, and the parent’s rights as nearest relative regarding the Mental Health Act.
CTR policy reminds commissioners as follows:
“Section 26A of the Children Act 1989 and associated regulations and guidance imposes on local authorities the duty to make arrangements for the provision of advocacy services for care leavers making, or intending to make representations under section 24D of the Children Act 1989 and for children making or intending to make a representation under section 26 of the Children Act 1989.”
“Advocacy services have to be provided for a looked-after child, a child in need or care leaver
directly making or intending to make a complaint on their own behalf.”
We will happily allocate a legal framework contractor to a patients’ CTR, even if they do not have an IMHA, but we will not take them just because there IS no IMHA; it’s not our concern to get people their Tribunal rights, if they are not fit for discharge. The pilot is focusing on their experience IN hospital and FOR care planning.
But it remains the law that
Those admitted are eligible for support from an IMHA (Independent Mental Health Advocate) irrespective of their age, if they are:
Detained under the Mental Health Act
Liable to be detained under the Act, even if not actually detained, including those who are currently on leave of absence without leave, or those for whom an application or court order for admission has been completed
Conditionally discharged restricted patients
Subject to guardianship, or
Patients subject to community treatment orders
And that is nowhere says that people incapable of consenting to information sharing are excluded from this valuable procedural right.
So we can just record where we don’t understand why there isn’t one, if that’s the case, in any given situation.
Is there any point in including a patient in this pilot if they already have a solicitor instructed?
Yes: but it’s not clear cut. The solicitor is likely to be acting under legal aid for Mental Health Tribunal-related work, and that will be focused on discharge from hospital, or the conditions for continued detention no longer being made out. CASCAIDr’s expertise is not mental health tribunal related; its contractors will not necessarily be competent to advise in the same way as an Independent Mental Health Advocate or a solicitor would do.
It is not the role of the CTR to be involved in decisions on the use of the Mental Health Act.
Our expertise is human rights-related, community care, mental capacity, and judicial review, complaints and ombudsman expertise. CTR policy (2017) says this: “Where costs are being considered as a determinant of appropriate intervention, the CTR can ensure that the personal and long-term costs on quality of life and impact on individual human rights are given a high priority alongside financial considerations.”
However, if the solicitor is a solicitor acting in the Court of Protection, whilst the person is still lawfully detained on a s3 or other compulsory section, for treatment, it is possible that we should be stood down, because it is conceivable that the Court of Protection is already focusing on the progress towards the care plan’s completion by way of 3 month reviews of how it’s going, with a view to authorising DoL in the community, for a person going into supported living. If that is the case, then there is very little that WE can hope to add to the CTR process by engaging, and it may well confuse the person and their family.
The third option is that the solicitor is already involved for the person in a public law sort of a case – a Judicial Review, in the Administrative Court, about the person’s human rights, or some other form of illegality, unfairness or irrationality, perceived to be going on in the hospital, to do with an action, a decision that affects the patient, or an omission. In THAT case, we should be stood down unless the Commissioner thinks that it would be useful to have us involved in any event on the basis that we can discuss the case with that solicitor, afterwards.
What about a situation where the person needs communication aids for participating fully in the CTR?
CTR policy suggests that this is the duty of the commissioners to organise; it is not for us to decide, but the provider will always be discharging a public function, whether or not it is a private hospital or an NHS one; so in our view, the cost should be shared. We will work with any specialist speech and language therapist who is supplied, as if we were working as advocates in a formal sense.
CTR policy also says that language and communication needs of participants should be considered where family members will be participating. That is probably because it is regarded as part of the Public Sector Equality Duty to provide extra equipment (‘an auxiliary aid’) or get someone to do something to assist the disabled person (‘an auxiliary service’). This includes providing personalised communication aids for people with autism or a learning disability that make it easier for them to communicate with others or providing people who are deaf with a hearing loop or sign language interpreter.
What about a situation where the person needs a language interpreter in order to be able to benefit from any legally literate legal framework expertise?
“Consideration should be given about the need for an interpreter or BSL signer to support the child, young person or their family members, and arrangements made accordingly.”
Project Lead Lorraine Foster confirms it is for the commissioner to supply what is needed for procedural fairness and participation purposes.
Who is responsible for obtaining capacitated consent to all the issues that arise from the scheduling of a CTR?
“The responsible commissioner will ensure that consent has been sought from the individual who is going to be reviewed for both the process and the required information sharing that enables it. The person’s capacity to give consent will need to be assessed and it is essential that he or she is supported in this process by the use of accessible information, the consent template available and by the help of people who know the individual well and understand their communication needs. This discussion should outline what and how information will be shared about the individual and their care, as well as why (referred to as fair processing).” CTR policy 2017
“If the person has a representative who has lasting power of attorney for health and wellbeing, they may make this decision on their behalf. An appropriate record of this process and decisions must be made”.
Where a person has capacity to consent, this consent will only be valid if it is informed.
Informed consent has the following characteristics:
The person from whom the consent is being sought understands why the information is required, what information might be shared and with whom.
They express a positive indication of their wishes (signing a consent form, saying yes when asked a question).
They are given a genuine choice to object/withhold their consent (rather than just being told their consent is required). Individuals who lack capacity should still be as fully involved as they can be in any decisions about their care.
Any assessment of capacity is decision and purpose specific, and in this case will only relate to the CTR itself. If information needs to be shared, then the purpose for sharing needs to be clear, and then a Best Interests decision made (as per Mental Capacity Act) for each purpose (if the person lacks capacity).
“Best practice should be followed in obtaining consent from a child, young person or from an adult who has parental responsibility. Like adults, young people (aged 16 or 17) are presumed to have sufficient capacity to decide on their own treatment, unless there is significant evidence to suggest otherwise. See Annex A: Care, Education and Treatment reviews (CETRs) for further guidance.“
What is your view on the suggestion in the CTR policy that “A review cannot take place without the consent of individuals with capacity, or if they lack capacity [without] a Best Interests decision being taken on their behalf and formally documented to that effect?”
We do not think that this is a full statement of the legal position, and we note that no reference is given.
Whereas, in contrast, the British Institute for Human Rights documentation, about Human Rights in the sphere of treatment and hospital detention for mental disorder, in its section on privacy and confidentiality, does NOT include people’s health data as something that the article 8 right to respect for one’s private life and home life, adds anything to, on top of lawful information governance principles.
Our perspective is that the CTR is a process for the competent informing of the means to deliver statutory functions and public law obligations, such as the amendment of the person’s care and treatment plan, and considering the feasibility of any s117 aftercare plan for post-discharge. That rounding out of thinking, for those with specific responsibilities, is made possible through the presence of outsiders who are there for introducing accountability, and competence with regard to lived experience. If one looks at the content of a CTR from the perspective of the patient, the content of a CTR, and the underlying decisions that have to be made in light of the CTR are either the duty of the commissioner, the s117 planning team, the hospital’s management, its RC or its care co-ordinator:
– Am I safe?
– What is my current care like? (relevant to requirement of a care and treatment plan for all those in hospital under a section)
– Is there a plan in place for my future? (relevant to the requirements for a plan and for discharge planning to have been commenced, and for s117 purposes)
– Do I need to be in hospital for my care and treatment? (relevant to Hospital Discharge duties and legality of ongoing detention)
If it is a first post-admission CTR, the purpose will be as follows: to “Review the circumstances and process of admission to establish if this is the most appropriate solution and whether care and treatment can in fact be provided in the community, or another setting.”
“To establish a clear idea of the purpose of admission, the expected outcomes, timescales and to ensure that planning is already underway for discharge with preliminary timescales.” (CTR policy 2017)
Where it is a later CTR in a series, for a long-term detained patient “The emphasis should be on establishing and reviewing the reasons for extended hospital stay, barriers to progression and discharge and whether the correct or most effective treatments are being provided. The review will be solution-focused, looking to find ways to overcome barriers to discharge, agree actions, responsibilities, timelines and how this will be monitored.”
CTR policy makes it clear that a request for a CTR is not a complaint, and that a CTR is not an inspection of the provider.
Neither is a CTR a discharge planning meeting: “The CTR is not a discharge planning meeting. Discharge planning is routine clinical activity, managed through the CPA, and once it is agreed by the team around the child, young person or adult, and their family, plans should be made for discharge. A CTR will scrutinise these plans.”
It makes it clear that the CTR itself is not even the decision-maker as to whether an individual is to be discharged or not. This is the responsibility of the treating clinician (responsible clinician for those detained under the MHA). But that decision will of course NEED to be taken – even though it is a clinical one – lawfully under statute and public law principles, and therefore by dint of taking all relevant considerations into account.
Consistently with this stance, there is no reference in the CTR policy as to what should happen if a capacitated person refuses consent, and the implication is that professionals’ meetings will simply have to go on, in another forum. We think that this is poor advice and judicially reviewable – but in fact other parts of the policy make the position clearer, and equally consistently with our view.
We would point out that the CTR policy says this, which is consistent with our view that the process will go on in any event, assuming a best interests decision:
“The CTR team has no regulatory powers, but is empowered on behalf of the person with learning disabilities and/or autism to ask questions based on a human rights and least restrictive framework.”
“Reviewers will meet the individual whose care and treatment is being reviewed as part of the day (unless they lack capacity and do not wish to be part of the process which has been assessed to be in their Best Interests under the MCA).”
“The outcomes of a Care and Treatment Review (CTR) will feed directly into the Care Programme Approach (CPA) process. This will lead to a revised CPA plan that will be the responsibility of the CPA care coordinator to complete and share with others including the individual and their family. Subsequent CPA meetings will address whether CTR actions are completed and progress is to be fed back to the chair of the CTR panel at agreed intervals. The person and their family will also be kept updated on progress. (Note: the Responsible commissioner retains overall responsibility for implementation of the agreed actions from a CTR and for follow up).”
“The care coordinator should ensure that CTR recommendations are incorporated into the CPA process and a process for feedback from regular CPA meetings to the commissioner as well as the person and their family as appropriate, should be agreed at the end of the CTR.”
If a person does not consent, then the implications of this decision should be explained to the patient and the reasons for the refusal explored with the person or their representative. Assurances should also be given that this withholding of consent will not affect their current care provision.
If the person does not agree to a CTR the reasonableness of this should be considered before advice is sought on the appropriate next steps.
How should we go about ensuring capacity and consent or otherwise making an information sharing decision?
Decision making about the patient’s Capacity / Consent / Lawful processing is relevant to whether we talk to the patient or just the family and/or to the CTR professionals on the day….
CTR policy highlights that consent from the patient must be obtained without exploring exactly why.
Our considered view is that this requirement is primarily driven by the issue of the patient’s personal involvement and information sharing rather than about consent to the CTR itself.
CTR policy and guidance envisages CTRs going ahead in the best interests of a person lacking capacity. Likewise, even a patient with capacity may not wish to be involved, but that does not affect the need for the process itself. The process positively requires the sharing of health data, to be effective, so as to operate for the benefit of the patient, regarding the content and accountability of their care and treatment regime in hospital and for informing future care planning.
It is our view that a decision about the patient’s mental capacity for data sharing decisions, and for consent to sharing it with US and/or their families is a logically prior question to be considered as part of patient selection for the pilot.
In the case of a capacitated refusal – or a considered MCA compliant conclusion that the person LACKS capacity, then lawful processing under information sharing rules can still occur, and is critically relevant to proper information sharing governance in the context of this pilot. The responsibility for that is – by all the CCGs, the case managers, co-ordinators, clinicians and hospital management teams involved with patients being considered for this project.
It would be discrimination that would be difficult to justify, in our view, if no patients lacking capacity were to be presented for this Advocacy PLUS pilot, and could lead to a claim for breach of article 14 in conjunction with article 5, article 6 and article 8 rights.
The law is that one must determine one’s condition for processing special category data before one begins this processing under the UK GDPR, and that one should document it.
There is a checklist here for your usage: https://ico.org.uk/for-organisations/guide-to-data-protection/guide-to-the-general-data-protection-regulation-gdpr/lawful-basis-for-processing/special-category-data/
The relevant facts shared with the person, and relevant to the issue that the person is being asked to consider, should be recorded, with the reasons for the decision and the identity of all those involved in the decision-making, as to their capacity regarding absorbing the information about the issue and the consequences of a decision one way or the other, believing and retaining it, weighing the pros and cons and communicating.
Reasons should be given by reference to the grounds on which the disclosure is to be justified in cases of incapacity or capacitated refusal of consent.
The need for this to be done by the data controller, affects the TIMING of disclosure, which we have already covered above, from the perspective of our own logistical needs.
People’s mental incapacity to understand what they are being offered based on information sharing, is a legitimate justification for some of the article 9 public interest conditions for not being able to give individuals a choice and/or get explicit consent for one’s processing.
The ICO says that people who lack capacity should not even be asked for consent, so if that is clear, one can progress immediately to identifying the basis for lawful processing and consider the best interests of the patient, from a balance sheet approach.
However, we think that the ICO line on an issue that is nuanced misses the point that one might not be able to form a view about their capacity, without exploring the issues – ie the pros and cons of what they’re being asked to decide, with them in the first place.
The decision-maker for MCA purposes regarding information sharing is always the holder (the controller) of the relevant information, and that is the person who is in need of the s5 Mental Capacity Act defence, to civil forms of redress for breach of confidentiality. So compliance with the MCA is important for those professionals.
Data relating to patients’ health is clearly sensitive personal data and this means that it can be shared without consent (regardless of capacity and thus even regardless of capacitated refusal of consent) on the basis of legal obligations, tasks carried out in the public interest, and/or vital interests, as long as the other rules or criteria imposed by data protection law are present and adhered to.
CCG/NHSE commissioners of the beds and care/treatment regimes are data controllers clearly exercising public functions, and the MHA Code requires people to have a care and treatment plan, and preparation for discharge planning to be made from admission onwards; and there is no obvious legal justification for not following the Code in this regard.
In order to develop a care plan, for a regime inside a hospital or for after discharge, one can only do that if one shares information and discusses it, because public law requires consideration of all relevant considerations, and for those who lack capacity, best interests consultation with anyone interested in the welfare of the individual. The pilot for Advocacy PLUS will only be of any value to CTRs and patients by way of legal framework analysis, if the need to share the information relating to patients is accepted.
So it is our position that commissioners and the hospitals’ Caldicott guardians preparing for a CTR have a right to share, and both a need and protection for, sharing information, if they think that it is necessary for the functioning of the CTR and if they want legal framework expertise there on the day (notwithstanding the way in which the national CTR policy and process framework explains the relevance of consent, on the part of the patient).
To put it another way, we will still happily talk to the patients’ families, if the CCG and clinician have decided that the person lacks capacity to refuse consent/consent to data sharing and that the disclosure is in the person’s best interests and is otherwise covered under article 6 and article 9 of the data protection framework.
We will still talk to the CTR professionals but NOT the family, ABOUT the patient, if the information has been shared with us, where the patient lacks capacity but has objected to our speaking to their families for the purposes of the CTR.
We envisage that a different approach may need to be taken at the point at which any patient needs to be support planned for, in a context of family input being something that will have to be explored in full.
For the information to be of use, and to ensure that planned CTR dates do not go OFF, for want of proper information governance, the project’s operational managers within the steering group need to ensure that commissioners and hospital management have sorted out clear consent or incapacity decisions in advance of sharing the patient’s information with us, and as between us and their families.
NB We recommend that professionals should take steps to find out whether patients who lack capacity to take particular decisions for themselves have a WELFARE attorney or deputy with authority to take the decision on their behalf. Where there is such a person, they act as the agent of the patient, and should be informed in the same way as the patient themselves about matters within the scope of their authority, which we would regard as including sharing of health data.
Do you have any tips for breaking down the issues for capacity and consent?
We would suggest that this complex task must be done regarding three specific issues, in accordance with the MCA, by relevant decision-makers (ie those acting for those holding the patient data, and under the direction of commissioners of the care and treatment):
a) the patient’s capacity to make a decision about being involved in the CTR process at all, in person…
A person in hospital is not able to be required to BE personally involved in a CTR even if they lack capacity. The CTR is just a forum for professionals for the better informing of everyone’s consideration of what must be done for the patient, in any event, on a regular basis, for keeping the care and treatment plan under review and preparing for discharge. These are legal obligations deriving from the MHA and Code.
If a person doesn’t want to be involved, they can still be offered a chance to speak to us about anything that they’d like to be conveyed, but it must be explained that we are not ordinary advocates, and that we are there to offer legally clued-up insights into the whole process and system, which we think could be useful for them – as to which, see the next section at b).
b) his or her capacity to understand that whilst their information may well be shared, for the efficient management of the CTR, regardless, under the ‘statutory purposes/public tasks’ exception, it is HERE proposed to share their documentary health data with outsiders being paid to do something that does not happen with ordinary statutory advocacy – that is, offer legal framework expertise to all involved at the CTR.
That is, does the patient have capacity to understand that they need to decide whether or not to consent to THAT degree of information sharing, with US, at the same time as understanding what we are going to try to do, please?
If yes, they have capacity to understand THAT, then DO they consent to that proposal?
If yes, they do so consent, then one can go on to c) below.
If they have capacity – but refuse consent to being spoken with, we will not expect to speak with them, but will still expect decision-makers to apply information governance rules to deciding whether or not to share preliminary and further background documentary information anyway, lawfully, with us, for the better functioning of the CTR. We are of the view that is lawful and that patient will understand that we are distinct from any advocate of their own, or any solicitor, they’ve got helping them.
If ‘No, they do not have capacity to understand the data sharing issue, itself’, then decision-makers must decide whether the information should be shared anyway using best interests, s5 of the MCA, and the GDPR rules – bearing in mind that if it is not shared, we will not even be able to be present at the CTR as planned….
c) thirdly, his or her capacity, in light of their condition or diagnosed mental illness, to understand and consent to our discussing their health data with their family members and Nearest Relative.
If a person who is regarded as having information-sharing capacity consents to the latter, then all well and good. We will talk to them AND to their relatives AND to the CTR professionals.
If the person with capacity refuses consent to the latter, then we will not be able to talk to their relatives about them. Just as the patient has human rights-based options for displacing their nearest relative, we think the same applies with regard to the respect to be accorded to their wishes, in this regard, rather than over-riding them. The Hospital and CCG may share the patient’s information with the Nearest Relative regardless of consent, we think, if the statutory purpose and context calls for it, but we are not commissioned BY either of those bodies, and we draw a line at involvement with the relatives in this situation, for ethical reasons and our own view of the law.
Apart from information which must be given to nearest relatives, the Act does not create any exceptions to the general law about disclosing confidential patient information, to carers, relatives or friends. The MCA requires best interests consultation, however, for a person lacking capacity, and for that to be effective, a certain amount of information would have to be regarded as necessarily shared, so the issue becomes somewhat circular.
If the patient simply lacks capacity at the stage of b) and/or c) above, then one of the other lawful grounds for sharing the information with us anyway, is likely to arise, and whether or not to utilise that fact, will be for the decision-making of the CCG and Hospital Caldicott Guardian.
If it is shared, then whether or not the person wants to be personally involved, in the CTR, we can still be of use to the process. If it is not ultimately shared, on one or other bases that the law provides, then obviously, CASCAIDr can’t be involved at all.
But non-involvement or non-sharing with US or non-communication between US and the family, before the CTR, is not incompatible with the process itself going ahead.
If the person doesn’t want to be involved in person, there is no making them. Even then, we can offer to speak to them about what they’d like to have aired, if they have capacity to communicate and prove willing to engage with us in good time.
We will consider any documentary information disclosed to us under information governance decision-making processes for incapacitated people, by way of preparation for the CTR, where this decision is taken by commissioners and hospitals in a timely manner.
We will talk to their relatives if a person has capacity and consents; we will not talk to their relatives before the CTR, if they have capacity and refuse consent, or otherwise object, even if incapacitated – if nobody wants to go on to lawful information sharing decision-making.
We will talk to the CTR attendees including family members, before and AT the CTR, on the basis of any documentary information available to us, if decision-makers have gone through the above steps regarding information governance for incapacitated people and decided it should be shared.
If someone has got capacity and is consenting to information sharing, but not to their family members, (assuming there is no welfare power of attorney or deputy) will they be able to benefit from the pilot?
Yes. The process will be ABLE to continue and everyone will take note of the CTR policy in such situations:
“Reviewers will meet family unless the family do not wish to participate, or the individual has not consented to their involvement.”
In CASCAIDr’s view, human rights even for those with impaired capacity and/or mental ill-health issues, ought to be respected. So, even where the patient LACKS capacity with regard to information sharing, but can still express an objection to sharing of their information with individual or collective members of their family; it is still a wish or a feeling. WE will not force ourselves on the patient in that situation, even if that were practicable, unless it is considered critically important for their best interests and human rights.
We cannot anticipate what position might be taken by information governance staff in the context of sharing with family members or inviting them to the CTR. But we appreciate that it is at least possible that they would not be invited.
In such cases, assuming a best interests decision for sharing of the information, in advance of the CTR, and CASCAIDr’s continued involvement, CASCAIDr recommends that an IMHA is secured, to make up for the absence of the family members from the process. The 2019 addendum to CTR policy says “If the person lacks capacity to consent, then their advocate must attend.”
How does data protection work in this context?
NOTES on Data Protection law from the MHA Code and Information Commission Office’s site:
Confidentiality – a brief summary
There are circumstances in which it is both justifiable and important to share otherwise confidential patient information with people outside the immediate team treating a patient.
Before considering such disclosure of confidential patient information, the individual’s consent should normally be sought.
If a person lacks the capacity to consent to the disclosure, it may be acceptable and appropriate to disclose the information in the person’s best interests. Healthcare professionals should use their professional judgement to determine what is in the patient’s best interest.
This should include consultation with colleagues, and the organisation’s Caldicott Guardian1 and take into account the patient’s previously expressed wishes and views.
Otherwise, confidential patient information should be disclosed outside the team only:
• with the patient’s consent (where the patient has capacity to consent)
• if there is a specific legal obligation or authority to do so, or
• where there is an overriding public interest in disclosing the information.
The ‘public interest’ is not the same as what might be of interest to the public. Where confidential patient information is involved, public interest justifications for overriding confidentiality could include (but are not limited to) protecting other people from serious harm and preventing serious crime.
The common law does not normally permit disclosure of confidential patient information solely in the patient’s own interests, if they have capacity to consent to the disclosure but refuse to do so.
A person’s right to have their privacy respected is protected by article 8 of the European Convention on Human Rights (ECHR). The disclosure of confidential information may be a breach of that right unless it is a necessary and proportionate response to the situation.
From the ICO’s site:
To ensure that your processing is lawful, you need to identify an Article 6 basis for processing. It must be a targeted and proportionate way of achieving a specific purpose.
In addition, you can only process ‘special category’ data if you can meet one of the specific conditions in Article 9 of the UK GDPR.
- Article 9 bases include
(c) Vital interests (could be in play if conditions in hospital are exacerbating suicidal tendencies)
(f) Legal claims (could be in play – neglect, negligence, human rights damages etc)
(g) Reasons of substantial public interest (with a basis in law drawn from 23 options) such as
6. Statutory purposes plus necessity for public interest reasons (these ARE in play, see above)
8. Equality of opportunity or treatment (could be in play)
10. Preventing or detecting unlawful acts (could be in play)
11. Protecting the public from wrongdoing by a body (could be in play)
16. Support for individuals with a particular disability or medical condition (likely to be in play as public bodies count as not for profit bodies)
17. Counselling (our role could potentially be seen as counselling)
18. Safeguarding (potentially in play)
(h) Health or social care (with a basis in UK law) covering
- the provision of social care (this is likely to include social work, personal care and social support services, so will be in play for discharge planning); or
- the management of health care systems or services or social care systems or services (clearly in play, given the TC programme itself).
Article 9(3) of the UK GDPR contains the additional safeguard that you can only rely on this condition if the personal data is being processed by (or under the responsibility of) a professional who is subject to an obligation of professional secrecy. Section 11 of the DPA 2018 makes it clear that in the UK this includes:
(a) a health professional or a social work professional; (so this is met) or
(b) another person who in the circumstances owes a duty of confidentiality under an enactment or rule of law (we are happy to say that this includes US, obviously).