Webcam clinics for diabetes (Newham, all ages) – mean duration only 9 minutes for both consultants and nurses, cf 25/30 minutes for face to face! DNA rate 13% cf 28% for face to face.
Patients felt HCPs more focussed on them, other studies have confirmed that eye contact is better! But feels more impersonal, so prior relationship is important.
It is acceptable for staff to receive small tokens of gratitude from a relative or carer in appreciation of care and treatment received. These are typically cards, chocolates or biscuits. Where staff are offered gifts of greater value these must be politely refused. [bottles of wine? Whisky?] If this is difficult they must refer the matter to their line manager.
Hospitality
It is acceptable for staff to receive small promotional items, e.g. pens, calendars, diaries. However,
Note – the term ‘gift’ includes benefits such as provision of services at a cost below that generally charged to members of the public.
Modest hospitality may be acceptable provided it is normal and reasonable in the circumstances e.g. lunches in the course of a working visit. Any hospitality accepted should be similar in scale to that which the NHS as an employer would be likely to offer.
All other offers of hospitality should be declined.
Staff should register with their line manager all such modest hospitality which they wish to accept, using the hospitality register declaration form (Appendix 3). In cases of doubt, staff should seek advice from their line manager.
If the nature of the event dictates a level of hospitality which exceeds this, then the individual should ensure that their line manager is fully aware of the circumstances and approves their attendance. An example of such an event might be an awards ceremony involving a formal dinner. If the line manager grants approval to attend, the individual should declare their attendance in the register of hospitality held by their line manager. The approving manager must ensure that this will not result in any future conflict of interest.
If the individual is invited to an event in a private capacity (e.g. as result of their qualification or membership of a professional body), they are at liberty to accept or decline the invitation without referring to their line manager. The following matters should however be considered before an invitation to an individual acting in a private capacity is accepted.
a) The individual should not do or say anything at the event that could be construed as representing the views and/or policies of NHS Lanarkshire.
b) If the body issuing the invitation has (or is likely to have, or is seeking to have) commercial or other financial dealings with NHS Lanarkshire, then it could be difficult for an individual to demonstrate that their attendance was in a private and not an official capacity. Attendance could create a perception that the individual’s independence had been compromised, especially where the scale of hospitality is lavish. Individuals should therefore exercise caution before accepting invitations from such bodies and
must inform their line manager.
c) Where suppliers of clinical products provide hospitality it should only be accepted in association with scientific meetings, clinical educational meetings or equivalent, which must be modest, normal and reasonable in the circumstances and in line with what the NHS would normally provide. Any such hospitality should be held in appropriate venues conducive to the main purpose of the event.
Sponsorship [should be] clearly disclosed in any papers relating to the meeting; products discussed should be described in relation to the Scottish Medicines Consortium, Formulary and the active promotion of clinical products is restricted to those in the Board’s Formulary and equivalent clinical product catalogues.
Any educational meetings hosted by suppliers must be approved by the line manager.
Before accepting an offer of hospitality the individual concerned should fill in a Registering Hospitality Declaration Form (attached as appendix 3) and have it approved by their line manager. A copy of the request form will be held as part of a Hospitality Register which will be available for scrutiny by the
NHS Board, Corporate Management Team, members of the public or press should they request such information.
Gillick ruling (1985) was primarily about sharing of information with parents (use of oral contraceptive), not about going against their decision!
You should involve children and young people as much as possible in decisions about their care, even when they are not able to make decisions on their own (GMC).
Competence is not binary, it varies according to context and over time. You need to assess ability to:
And you need to assess context:
Even then, you should encourage involvement of parents. In difficult situations, consider involving multidiscip team, independent advocate, child protection teams. ”You should not make unjustified assumptions about a child or young person’s best interests based on irrelevant or discriminatory factors, such as their behaviour, appearance or disability”.
At 16yrs, a young person can be presumed to have the capacity to consent. In Scotland, parents cannot authorize treatment a competent young person (even under 16yr) has refused. In E&W/NI, High Court can override up to 18yrs – “children and young people have a right to consent, but not to refuse treatment if this would put their health in serious jeopardy” (BMA consent toolkit). Court rulings have gone both ways.
Neuberger criteria: competence, information, understanding, voluntariness. All dubious!
GMC guidance on consent (2008) – places it in context of process of discussion and decision-making. There is no “once size fits all” method. Starts with information being provided, in different formats. References advocacy services. Does not set threshold values for discussing risks: sensible, given how complex the communication of risk can be!
Acknowledges that some patients do not wish to go into detail about their condition. While doctors must respect their patients’ wishes, there is a minimum level of information that a patient is likely to need in order to give valid consent.
Adults with Incapacity Act (Scotland 2000) and Mental Capacity Act (England 2005) establish mechanisms for incapacitated adults. Provides practical advice on assessing capacity.
In Scotland, legal age of consent is clearly defined as 16yrs (Age of Legal Capacity (Scotland) Act 1991). In England, Family Law Reform Act 1969 defines “child” as under 18yrs! This leads to some issues when it comes to competency.
Written consent – the law only requires written consent for a very few things, eg IVF, organ donation! But you must record the fact that you have gained consent in medical records. And it may just make everything easier to get it written anyway.
Proxy consent by parents can create conflict of interest eg handicapped child. Authorization a better concept (presumes right of child to take part in research)? Non-therapeutic research is not strictly legal, but usually accepted if minimal risk ie not significantly increased risk compared with standard care. Right of research enshrined in possibility of benefit outweighing possible risks. Alternative is therapeutic orphans, treated without good evidence of benefit. Failure to conduct research led to prophylactic sulphonamide disaster in 1950s (increased kernicterus). Research without consent not strictly legal but possibly acceptable for emergency situations, but retrospective consent should be sought (not really consent at all, of course) else assent (simplified consent) with later ratification, in stages if necessary.
Reasons for refusal in EURICON study: perceived risks/distress; distrust of research/researchers; dislike of the tone of approach of the doctor; shock and inability to decide; inconvenience of follow up. Hence communication skills essential. Information sheet should be given but should not be relied upon. As a minimum, parents must know that the treatment is being given as part of a trial, that their child may be receiving an experimental or unproven treatment, that they are free to say no and to opt for standard treatment. Check list should be provided. Involvement of independent committee should be highlighted. Feedback to parents should be encouraged.
Inability to give consent eg children, unconscious, learning difficulties does not mean research should not be done – indeed that would deprive patients and others of potential benefit. But should only be done if unable to do same study with patients who can give consent; risks should be minimal (for non-therapeutic research that means equivalent to everyday life or minimally invasive therapeutic interventions; assent should be sought from appropriate advocates eg relatives, who should be provided with the same information which would have been given to a competent patient; research should be explained after its completion to participants who have regained their competence subsequently (NOT retrospective consent, mind you).
Use of medical records without consent is a moral wrong – should be balanced against potential benefit. Patients should be informed of this potential use of their records and reassured about confidentiality. Only do if consent not praticable; research is of sufficient merit and has potential benefit; identifiers should be removed where possible; contact with patients is not anticipated; permission should be gained from responsible clinician.
For births registered in Scotland, a father acquires parental responsibility if he was married to the mother at the time of the child’s conception or
subsequently. An unmarried father will acquire parental responsibility if he is recorded on the child’s birth certificate and the child was born on or after 4 May 2006 (Scotland), December 2003 (England).
If not on the birth certificate, an unmarried father must obtain a court registered parental responsibility agreement or order. Birth certificates can be updated with new information.
Parental responsibility is not lost automatically with divorce, loss of custody rights, or if a parent makes no financial contribution! Young people under the age of 16 who bear children still get rights, although usually additional support will be necessary.
Foster parents usually do not have parental responsibility – that remains with the local authority and the birth parents. The parental rights of a child born under a surrogacy arrangement remain with the surrogate until the new parents complete adoption procedures or else obtain a court order (under the HFE Act).
Parents are allowed to authorize 3rd parties eg child minders, Grandparents to take over particular responsibilities. In terms of the Childrens Act, what is reasonable to safeguard/promote the child’s welfare is permitted to such carers (in loco parentis). If however the parent is thought likely to
object to a treatment decision, only emergency actions are acceptable pending contact with the parents directly. Competence of child themselves obviously relevant too.
Up to 6 people can have PRRs for the same child. But becomes unmanageable!
Decisions regarding the following should involve consultation between all with PRRs:
But PRRs are not a weapon for interfering with day to day life! Gillick ruling made it clear that parental rights exist only for the benefit of the child! Less serious decisions may simply require other party to be informed.
Stepfathers are in a funny position. Marrying the mother gives rights, but does not remove rights from biological father. Not being married leaves only the option of adoption, or else applying for court order if later separation after being an important part of a child’s life.
Non-consensual adoption under close judicial scrutiny – the consent of the parent with capacity can only be dispensed with if “nothing else will do”, and not because providing requisite support is difficult.[https://ukhumanrightsblog.com/2013/10/01/when-adoption-without-consent-breaches-human-rights/]
Civil Partners – biological parents remain the legal parents. Civil partnership confers equivalent step-parent status as married non-biological parent. Parental responsibility can therefore be obtained either by consent of biological parents, court order or adoption.
Residence Order confers PRRs too. Contact Order does not.
It should be noted that parents who do not have parental responsibility may also play an essential role in determining best interests and may have a right, under the Human Rights Act (rights, as individuals, to respect for private and family life – Article 8), to participate in treatment decisions [BMA toolkit].
DSM-5 has “illness anxiety disorder”, defined as preoccupation with the idea that you’re seriously ill, based on normal body sensations (such as a noisy stomach) or minor symptoms (such as a minor rash), to the degree that it gets in the way of normal life. Other features are persistence of such ideas over 6 months, finding little or no reassurance from negative test results or a doctor’s reassurance, repeatedly checking body, avoiding people, places or activities for fear of health risks.
In other words, hypochondriasis. Which gets its name from the idea that such feelings came from liver/spleen/gall bladder (“melancholy” – black bile). William Cullen, in Edinburgh in the 1790s, appeared to take a particular interest in this.
For the sake of diagnosis, this disorder requires the absence of symptoms, which excludes the large group of people who have similar preoccupation and fears about non-specific or unexplained signs and symptoms.
Health anxiety is therefore a broader concept, and can include anyone who is more desperate for relief from worry, than for relief from actual symptoms.
Cyberchondria = combination of increased pathologisation of society, and ability to browse the internet. Because provides the opportunity to find very serious, extremely unlikely explanation for problems.
Diagnosis of health anxiety is well accepted by patients if explained respectfully!
[BMJ 2016;353:i2250]
“Medicine inhabits an inexact territory with terrifying hazards, and the best way to avoid them is to demand honesty from everyone. The first truth that we must accept is that human beings are not perfect… We must lose the fear that we’ll be blamed if [our patients] find fault” (Margaret Mccartney, BMJ)
The discipline of medicine concerns the manipulation of knowledge under uncertainty (Siddharta Mukherjee).
Leadership is not the same as management: yes, it’s about people and systems and getting things done. But it’s more about inspiration, long term goal setting, encouraging people in their own journeys.
Can all be a bit alpha and masculine. Yet lots of evidence that a compassionate style is more effective. Study by Jonathan Haidt (New York University) shows that if employees are moved by the compassion or kindness of their leaders (a state he terms elevation), the more loyal they become to him or her, even if it isn’t directed at them personally.
We are especially sensitive to signs of trustworthiness in our leaders, and react strongly to “arsehole” behaviour.
Not only does an angry response erode loyalty and trust, it also inhibits creativity by jacking up stress levels. Positions of power tend to lower our natural inclination for empathy, so it is particularly important as a leader to be self aware, and actively practice seeing situations form their employee’s perspective.
Key challenges – junior doctor training, MCNs, HEAT targets, centralization vs local demand. Opportunities: improvement, efficiency.
Circle of influence (Steven Covey) – small subset of circle of concerns. Note potential for stress and disillusionment in face of concerns, at time of need for motivation and creativity! Always potential for extending circle of influence…
SWOT analysis: strengths, weaknesses, opportunities, threats. Build on strengths, mitigates weaknesses, capitalize on opportunities, tackle threats head on.
To maintain trust and confidence – stay in touch, know your people. Have a common platform rather than being seen as separate.
Transactional vs transformational styles:
Vision – relevant, strategically worthwhile over years, concordant – should stretch capabilities and self-image
Determines Mission: standards and values
Then in turn Goals (organisational), Strategies, Action plans
Having the broader goals and strategies helps services align, and allows stepwise change within a comfort zone rather than radical revolution with panic
SMART Plus objective – specific, measurable etc Plus clarification about why it’s important, acknowledgement and recognition.
Barriers should be flagged up as next steps – need to keep a “wildly important goal” (WIG) on the agenda of each meeting to maintain perspective.
Deciding how to distribute health care costs may include looking backwards at what behaviours have contributed to a condition (eg tattoo removal may not be publicly funded, but removal of a disfiguring skin lesion where suffering is equivalent is), or may look forward to how behaviour might affect the effectiveness of a treatment (eg liver transplant with continued alcohol excess). Sometimes looking forward and looking backwards have the same outcome, but not necessarily.
There are a number of arguments against these attitudes:
The liberal egalitarian response is to hold individuals responsible for their choice, but not for the consequences of their choice. The egalitarian view is that everyone should have equal opportunities, regardles of their natural or social advantages/disadvantages at birth. Of course, it can often be debated whether “choice” is ever truly distinct and independent of circumstance! The liberal view is that there should be no formal or informal barriers (although not necessarily compensation for the disadvantaged).
So it would be appropriate to tax smokers an amount related to the increased health costs of smoking. It would not be fair to tax some smokers more than others, even if the costs of their treatment might be more – it is the choice that matters. This avoids all the objections above, apart from the moralistic one: but at least decisions on lifestyle taxes are made democratically, not by health care providers.
Does not solve the problem of whether behaviours can truly be considered a choice, when they are often predictable based on socio-economic factors. Plus, not all types of behaviour can be taxed – physical inactivity? Poor health care seeking behaviour? Unsafe sex?
Cappelen and Norheim, J Med Ethics 2005;31:476–480. doi: 10.1136/jme.2004.010421
Traditional M&M (mortality and morbidity) meetings – Many errors are not reviewed, and the key protagonists often not present when a case is being discussed; fail to engage affected families. This lack of transparency in the context of the Francis report is at odds with our duty of candour to patients when things go wrong.
Much energy is spent in the NHS concluding whether errors, adverse incidents and deaths are ‘avoidable’ or ‘preventable’.
‘Avoidability’ is an arbitrary conclusion – what matters, surely, is the care that the child received. Professional analysis of the care given reassures parents that their child’s life is of primary importance, and may provide some comfort that their experience will benefit other children.
Root cause analysis (RCA) tracks the origins of an adverse event back to find causes – too simplistic?
cf ‘Safety-II’ approach – focuses on understanding how things usually go right, and only then exploring why things occasionally go wrong. Rare serious events, although easy to identify, often have complex aetiology, and factors may be difficult to modify. In contrast, “normal” behaviour may be easier to understand and to influence.
Parents’ own questions should inform professional discussion. Analysis should go beyond identifying what the child died from, to considering why a child died of that condition, in that place, at that time.
“The investigation of medical error, adverse events and child mortality each requires a distinct approach that revolves around a continuous cycle of reporting, professional scrutiny and follow-through of SMART actions. These processes should separately feed into a properly formatted clinical governance meeting, the purpose of which is to provide assurance to hospital boards and other regulatory bodies that there exists coordinated oversight of risk management, clinical effectiveness, audit and patient experience.”
[James Fraser, Bristol – Arch Dis Child doi:10.1136/archdischild-2015-309536 ]