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Right Decision Service newsletter: April 2024

Welcome to the Right Decision Service (RDS) newsletter for April 2024. 

Issues with RDS and Umbraco access

Tactuum has been working hard to address the issues experienced during the last week. They have identified a series of three mitigation measures and put the first of these in place on Friday 3rd May.  If this does not resolve the problems, the second mitigation will be actioned, and then the third if necessary.

Please keep a lookout for any slowing down of the system or getting locked out. Please email myself, mbuchner@tactuum.com and onivarova@tactuum.com if you experience any problems, and also please raise an urgent support ticket via the Support Portal.

Thank you for your patience and understanding while we achieve a full resolution.

Promotion and communication resources

A rotating carousel presenting some of the key RDS tools and capabilities, and an editable slideset, are now available in the Resources for RDS providers section of the Learning and Support toolkit.

Redesign and improvements to RDS

The redesign of RDS Search and Browse is still on-track for delivery by mid-June 2024. We then plan to have a 3-week user acceptance testing phase before release to live. All editors and toolkit owners on this mailing list will be invited to participate in the UAT.

The archiving and version control functionality is also progressing well and we will advise on timescales for user acceptance testing shortly.

Tactuum is also progressing with the deep linking to individual toolkits within the mobile RDS app. There are several unknowns around the time and effort required for this work, which will only become clear as the work progresses. So we need to be careful to protect budget for this purpose.

New feature requests

These have all been compiled and effort estimated. Once the redesign work is complete, these will be prioritised in line with the remaining budget. We expect this to take place around late June.

Evaluation

Many thanks to those of you completed the value and impact survey we distributed in February. Here are some key findings from the 65 responses we received.

Figure 1: Impact of RDS on direct delivery of care

Key figures

  • 93% say that RDS has improved evidence-informed practice (high impact 62%; some impact 31%)
  • 91% report that RDS has improved consistency in practice (high impact 65%, some impact 26%)
  • 85% say that RDS has improved patient safety (high impact 59%, some impact 26%)
  • Although shared decision-making tools are only a recent addition to RDS, and only represent a small proportion of the current toolset, 85% of respondents still said that RDS had delivered impact in this area (53% high impact, 32% some impact.) 92% anticipate that RDS will deliver impact on shared decision-making in future and 85% believe it will improve delivery of personalised care in future.

Figure 2 shows RDS impact to date on delivery of health and care services

 

Key figures

These data show how RDS is already contributing to NHS reform priorities and supporting delivery of more sustainable care.

Saving time and money

  • RDS clearly has a strong impact on saving practitioner time, with 90% of respondents reporting that this is the case. 65% say it has a high impact; 25% say it has some impact on time-saving.
  • It supports devolved decision-making across the multi-professional team (85% of respondents)
  • 76% of respondents confirm that it saves money compared, for example, to investing in commercial apps (54% high impact; 22% some impact.)
  • 72% believe it has impacted already on saving money and reducing waste in the way services are delivered – e.g. reducing costs of referral management, prescribing, admissions.

Quality assurance and governance

  • RDS leads are clear that RDS has improved local governance of guidelines, with 87% confirming that this is the case. (62% high impact; 25% some impact.)

Service innovation and workforce development

  • RDS is a major driver for service innovation and improvement (83% of respondents) and has impacted significantly on workforce knowledge and skills (92% of respondents – 66% high impact; 26% some impact).

New toolkits

A few examples of toolkits published to live in the last month:

Toolkits in development

Some of the toolkits the RDS team is currently working on:

  • SARCS (Sexual Assault Response Coordination Service)
  • Staffing method framework – Care Inspectorate.
  • SIGN 171 - Diabetes in pregnancy
  • SIGN 158 – British Guideline on Management of Asthma. Selected sections will be incorporated into the RDS, and complemented by a new chronic asthma pathway being developed by SIGN, British Thoracic Society and NICE.
  • Clinical pathways from NHS Fife and NHS Lanarkshire

Please contact his.decisionsupport@nhs.scot if you would like to learn more about a toolkit. The RDS team will put you in touch with the relevant toolkit lead.

Quality audit of RDS toolkits

Thanks to all of you who have responded to the retrospective quality audit survey and to the follow up questions.  We still have some following up to do, and to work with owners of a further 23 toolkits to complete responses. An interim report is being presented to the HIS Quality and Performance Committee.

Implementation projects

Eight clinical services and two public library services are undertaking tests of change to implement the Being a partner in my care app. This app aims to support patients and the public to become active participants in Realistic Medicine. It has a strong focus on personalised, person-centred care and a library of shared decision aids, as well as simple explanations and videoclips to help the public to understand the aims of Realistic Medicine.  The tests of change will inform guidance and an implementation model around wider adoption and spread of the app.

With kind regards

Right Decision Service team

Healthcare Improvement Scotland

Tissue Donation (011)

Warning

A guideline is intended to assist healthcare professionals in the choice of disease-specific treatments.

Clinical judgement should be exercised on the applicability of any guideline, influenced by individual patient characteristics. Clinicians should be mindful of the potential for harmful polypharmacy and increased susceptibility to adverse drug reactions in patients with multiple morbidities or frailty. 

If, after discussion with the patient or carer, there are good reasons for not following a guideline, it is good practice to record these and communicate them to others involved in the care of the patient.

PROCEDURE

Assessment Prior to Referral

The criteria below are to help hospital staff, carry out an initial assessment of the deceased to see if he/she might be a suitable donor.

Any one who dies in the department can be considered as per the posters.

Please check the Organ donor register on 01179757580.

Tissue services staff are available 24 hours a day for further advice.

Tissue

Age Range

Heart Valves

Up to age 70

Corneas

From age 2 – 95 years

Tendons

18 – 60 years

Skin Donation

Adult to 70 years

General Contraindications

  • Relatives refuse
  • Unknown identity
  • Procurator Fiscal refuses permission

NB: Post Mortem in itself is not an absolute contraindication. Where a PM is required/requested then the tissue coordinators will liaise with the procurator fiscal where there is need for permission.

Main Medical Contraindications to Tissue Donation

  • Untreated systemic infection
  • History of malignancy (refer to coordinator for corneal donation)
  • History of chronic viral hepatitis or HIV infection.
  • Diseases of unknown aetiology (e.g. multiple sclerosis, crohn’s disease)
  • Active multi-system autoimmune diseases
  • Active chronic infection
  • Risk factors for creutzfeldt-jacob’s disease or its variant (for example dementia)
  • Patients on immunosuppressant’s

Main Corneal Specific Contraindications to Donation

  • Malignancies, leukaemia, lymphoma, myeloma
  • Retinoblastoma
  • Malignant tumours of the anterior segment
  • Intrinsic eye disease, ocular inflammation and any congenital or acquired disorders of the eye, or previous ocular surgery that would preclude successful graft outcome.
  • Infectious disease in eye tissue
  • Alzheimer’s disease

These are the major medical conditions that need to be assess prior to referral.

There are detailed criteria for acceptance/deferral that will be discussed with relatives.

Discuss Issue with Relatives

We are aware that not everyone is comfortable approaching a family when they have just been told about the death of a loved one.

We are trying to increase the number of tissue donors we get in the emergency department.

So the following people, if on shift, are willing to do “the approach” if you are uncomfortable with:

Designated Requestors – Sept 2015

Bernadette Allan

Jenny Kinsella

Laura MacKay

Denise Wilkinson (link nurse)

Alexis Savage

Barbara Leggat

Jocelyn Brittliff

Ashleigh Irons

Record discussion on Summary in the:

  • Case notes
  • Checklist for Deaths in the Emergency Department sheet (these are located in the Fiscal Folder and should be completed for every death in the department)

Contact tissue services on radiopage 07659107029 (24/7)

Specialist nurse in organ donation radiopage 07659594979

Obtain Blood Sample

All donors must have their blood tested for the presence of infection.

These must be taken as soon as possible after death but no later than six hours.

Required samples are 2 clotted and 1 unclotted – there are pre-make packs in the resus room.

BACKGROUND

The Human Tissue (Scotland) Act 2006 firmly places a duty on Scottish ministers to promote and develop programmes of transplantation and to promote information and awareness of donation to the population of Scotland.

From 1st September the Human Tissue (Scotland) Act 2006 cam into force and with it came a change in the way that families decide on donation options after a loved one dies. The most fundamental change is that, under the act, the wishes of the deceased in life will now take precedence over the wishes of the next of kin.

The new legislation introduces the concept of “authorisation” and in doing so, embodies the principle that people can expect the wishes they have expressed in life about what should happen to their bodies after death to be fulfilled.

The main aim of the 2006 act is to increase donation rates of both solid organs and tissues in Scotland and to help make families decisions about donation when someone dies, easier.

Tissue service tissue co-ordinators of the Scottish national blood transfusion service work in close collaboration with donor transplant co-ordinators of NHS blood and transplantation to maximise the number of potential donors and recommend that you make your wishes for donation known.

This can be done in several ways:

  • Join the organ donor register by calling 0300 123 23 23 
  • Visit Organ Donation Scotland and register online
  • Carry a donor card
  • Record your wishes in your will
  • The act further makes provision for those who have no registered, but have made their wishes known about donation after their death. This makes the decisions that relatives have to make easier, knowing that their loved one has “authorised” them to donate on their behalf.
  • The act also makes provision where the deceased leaves no formal wishes. The nearest relative will be asked to consider giving “authorisation” on the basis of what they believe the deceased wishes would have been.

The different organs and tissues what can be donated are listed below. Heart, lungs, liver, kidneys, pancreas and small bowel are the solid organs that can be donated and along with tissues, corneas, heart valves and tendons and skin-late 2007, makes the gift of donation very worthwhile and a single act of donation can help save and enhance up to 20 other people’s lives.

For more information on the Human Tissue (Scotland) Act 2006 log on to www.opsi.gov.uk/legislation/scotland/about.htm

27% of Scots have already signed up to the organ donor register, but in a recent survey 90% of people supported organ donation. So make it easier on your family to make decisions after you die.

TISSUE DONATION

The Scottish National Blood Transfusion Service in Scotland has been charged by the Scottish Executive to be the prime provider of all blood, blood products and tissues for therapeutic use in Scotland.

Almost everyone who dies in the Emergency Department has the potential to become a tissue donor. The types of tissue that can be donated are heart valves (the aortic and pulmonary artery), both of the patellar and achilles tendons and both corneas and skin (late 2007).

There are however certain criteria that must be met before a person is able to become a tissue donor.

FREQUENTLY ASKED QUESTIONS

What is the difference between organ and tissue donation?

Organ donation received a great deal of media attention. There are often reports of the latest advances in the transplantation of hearts, livers, kidneys and lungs. Few people realise, however, that tissue can also be donated. Tissue are classed as, parts of the body that consist of “an aggregation of similarly specialised cells united in the performance of a particular function”. Examples would be bone, skin, heart valves, tendons and the cornea of the eye.

With a solid organ donation, it is vitally important that the organ is removed from the donor and transplanted into the recipient within the shortest possible time, so that the organ does not deteriorate. With tissue donation, however, it is possible to retrieve the tissue and store it over a period of time. This allows the tissues to be screened for possible infectious agents and allows a pool of available tissue to be established.

Organs can be retrieved from a donor that has been declared “brain stem dead” and is supported by a ventilator. In this way the function of the organs is maintained.

Some organs may also be retrieved from non heart beating donors. This is where, 10 minutes after a systole has taken place, and in a controlled manner, certain organs may be retrieved. Studies have shown that they are robust enough to be transplanted after a systole has occurred.

Tissues can be donated after death but must be retrieved within 24 hours.

Which tissue can I donate?

It is possible to donate several tissues following death. The most common are cornea, heart valves, tendons and skin (will be introduced late 2007), all of this tissue is used to greatly improve the quality of life for many people. It is also possible to donate before death. There is an extensive programme in Scotland where people who are to undergo primary hip replacement voluntarily donate the femoral head that is to be removed before the prosthesis is implanted.

How can I ensure that my tissues will be donated after my death?

If you wish to make a donation following your death, it is vitally important that you inform your next of kin of your wishes. Simply carrying a donor card does not guarantee that donation will occur, since it is your next of kin who must provide the information necessary in order for authorisation to be recorded. Carrying a donor card, however, will mean that family and hospital staff are aware of your wishes and this may make the decision easier for them. It will also help if you sign up for the national organ donor register. This provides a database of donors from all over the country. If you become a potential donor, and you do not have a donor card on your person then the register will be checked and your wishes made known. To join the national organ donor register telephone 0300 123 23 23 or log on to Organ Donation Scotland and register on line.

What will happen to the tissues that I have donated once they have been removed?

In Scotland, heart valves, tendons and skin are stored at the tissue bank in Edinburgh.  Corneas are sent to the Manchester or Bristol eye banks. All tissues have mandatory testing carried out for viral and bacterial diseases that may be passed on to a tissue recipient. The tissues are placed in quarantine until such times as all results are known and the tissue is then suitable for release to use.

Who will benefit from my donation?

With whole organ donation a single organ is removed and transplanted into the recipient. In tissue donation, a single donated tissue can benefit more than one person.

Heart valve donation

The whole heart is removed and the aortic and pulmonary valves are dissected out. This means that two people can benefit from a single  donation. The heart valves are used to repair congenital heart defects in children and young adults and to correct acquired diseases of the heart valves in adults. (i.e. Bacterial endocarditis)

Tendons

Patellar and achilles tendons are removed, stored frozen and are used to repair damaged ligaments, most commonly the cruciate ligament in the knee. The uses are for traumatic injury to the knee where long-term mobility is in question e.g. young fit adults whose normal daily activities are hampered due to restrictions in movement that can affect job prospects and normal  mobility. Patellar tendons can be split in two, so six people can benefit from tendon donation from one donor.

Corneas

Corneas are used when a patient’s own cornea has become compromised, either through disease or injury that results in the loss of sight in the eye. Diseases such as keratoconus, corneal ulceration, herpes simplex and trauma are a few examples of such illnesses that may require corneal transplantation to restore vision. Corneas are stored in eye banks either in Manchester or Bristol.

Bone

Bone is retrieved from live donors who electively donate the femoral head that is to be replaced when undergoing primary hip replacement. Surgeons use this to repair any areas of bone where osteogenesis is necessary to form new bone e.g. chips for small joint surgery, spinal and facial surgery or it can be ground down and used with cement for secondary hip revision surgery.

Skin

Skin is used to save the lives of people that have sustained major burns.

Who Can Donate?

Each of the different tissues have limitations over who can donate and these are generally to help protect the recipient. Tissue cannot be donated by anyone who does not fall within the criteria set within the nation donor selection guidelines. However each tissue has specific exclusions and acceptance criteria e.g. the upper age limit for heart valve and tendon donation is 60 years, but there is no upper age limit for cornea or bone donation. All of the above tissues are described as being life enhancing not life saving and are therefore subject to the same rigorous guidelines with regard to safety as blood and blood products.

Does retrieval cause the body to be disfigured?

Retrieval of all tissue is carried out in such a way that there is no loss of shape to that part of the body. There is however, a scar that is sutured in the same manner as at any operation. All of this is fully explained to relatives at the time of consent.

Does tissue donation cause delay in arranging a funeral?

Donation takes place in the mortuary within 24 hours of death. This means that donation will not cause delay to last offices and funeral arrangements.

How can I find out more about tissue donation?

The first point of contact should be the regional transplant or tissue donor co-ordinator.

Tissue donor co-ordinator, Agnes Barr – based in SNBTS at Gartnavel General Hospital in Glasgow

– 0141 357 7700 or via the main tissue bank in Edinburgh on 0131 536 5751

Editorial Information

Last reviewed: 07/03/2022

Next review date: 28/02/2025

Author(s): Joselyn Brittliff.

Version: 5

Author email(s): joselyn.brittliff@ggc.scot.nhs.uk.

Approved By: Glasgow Emergency Medicine Clinical Governance Group

Reviewer name(s): Joselyn Brittliff.

Document Id: 011