NHS England/Together for Short Lives webinar: Palliative and End of Life Care for Children and Young People

TOGETHER_LIVES_RESIZE_800_450_90_s_c1_c_c&NHS England 465

Dear colleague

Together for Short Lives will be leading the next in NHS England’s National Palliative and End of Life Care webinar series, which will be held on Tuesday 2 May, 13.00 – 14.00. The session will consider how to identify children requiring palliative care;  explore where children are cared for and address the need for optimal symptom management and resources available to support this.

Over 40,000 babies, children and young people in England have a life-limiting condition and are likely to require palliative care throughout their lives. Children who require palliative care can be cared for in various settings: in hospital, at home, or in a children’s hospice. Care also continues across other settings including education such as schools and universities and within community and leisure services, groups and clubs.  Giving families real choice; a choice of place of care; a choice of place of death; a choice of emotional and bereavement support; and putting the child and family at the centre of decision making, is key to enabling them to have the best quality of life, and death, possible.

Despite the publication of the Government’s End of Life Commitment and NICE guidance on End of life care for infants, children and young people with life-limiting conditions, there are still many challenges in securing a quality of life and a quality of end of life care for children and young people with life limiting conditions.

There are limited places available on this Webinar and you will need to Register to attend

The webinar will be recorded. If you are unsuccessful in securing a place or are unable to attend but would like a copy of the recording then please let us know.

For more information on attending a Webinar, please refer to the attached Guide.

If you have any queries, please contact us on ENGLAND.endoflifecare@nhs.net

Kind regards

End of Life Care Team

Medical Directorate

NHS England |  5W25 | Quarry House | Quarry Hill | LEEDS | LS2 7UE

Email: england.endoflifecare@nhs.net


@iHealthVisiting needs patient and public representatives for “receiving different news” study #IDHEKSS


Dear All

I am looking for two people who have had the experience of receiving different news about their baby either during pregnancy or at birth, to be part of the patient and public representatives for our study. Their role will be to comment on the study approach, study instruments and their appropriateness with their insight of having been through this experience. We will develop information in lay man terms for them to look at.  Commitment is maybe three times during the 18 month project equating to once before the project starts, maybe attend one of the steering committee meetings and also at the end before we publish our results.

Please may you let me know if you know anyone who may be willing to take this on for us?

Kind regards

Dr Esther Mugweni BSc, MPH, PhD

Research Lead, Institute of Health Visiting
Email: esther.mugweni@ihv.org.uk 

POTENTIAL Level 7 Apprenticeship in #LD and autism across health and social care including nursing, social workers and AHP’s #IDHEKSS

Dear All

Good news! An expression of interest for the advanced clinical practitioner role has been accepted for development and will be relevant across health and social care.

Such an apprenticeship will be designed for implementation across health and social care learning disability and autism services. Including health and social care provides a great opportunity to enhance the core and specialist elements of the course. More importantly this overarching approach may also and improve the care to the people with learning disabilities and or autism, their families and carers.

Just for clarity the expression of interest that has been approved is for the Advanced Clinical Practitioner (degree) role which has been accepted for development. However the Standards Development Team have requested that the output be relevant across health and social care.
The request for it to be relevant to health and social care therefore positions it perfectly for implementation in Learning Disabilities/Autism thus providing a multi disciplinary, multi sector learning disability/autism apprenticeship at Level 7 . It provides a great opportunity to enhance both the core and specialist option/ elements of the role and would provide an real opportunity for enhancing the opportunities for people working in the learning disabilities/autism area regardless of sector and profession. More importantly this overarching approach may also and improve the care to the people with learning disabilities/ autism and their families and carers.
It is for this reason key stakeholders have been asked to contact with the trailblazer directly via the e mail address below to support the potential development. I am also in the process of arranging a stakeholder meeting to scope the level of support for the development . This is likely to take place in London in June and will be open to interested parties.

In the meantime can I would be grateful if through your networks you ask all interested organisations, employers ( NHS, social care and the private sector and independent sector) and interested HEIs etc to make their support for the development known by personal contact via


Many thanks for your assistance with this

Best wishes

Marie Lancett

Workforce Specialist (South) – Transforming Care Programme

 Health Education England

E. Marie.lancett@nhs.net

NEW campaign about Annual Health Checks – Don’t miss out!

Dear colleague

I am emailing to let you know about a fantastic new campaign and set of resources about the Learning Disability Register, Annual Health Checks, and Summary Care Records, produced by Mencap in collaboration with NHS England. This is all about encouraging people with a learning disability to get better healthcare, by letting people know that doctors and other healthcare workers can provide extra support and advice. The main message is to make sure you tell your doctor that you have a learning disability, so that they can add you to their register.

Please see the attached release and help us to share this important message! – Tell your doctor you have a learning disability and they can check if you are on the learning disability register. If you are not, they can arrange for your name to be added. This means you will be offered extra support to make things a bit easier. And, importantly, you could get an Annual Health Check. This information can be shared with other doctors and nurses, so they can make things easier for you too.

The campaign is called ‘Don’t miss out’ www.mencap.org.uk/dontmissout and the hashtag for social media is #dontmissout

The direct link to the guides and resources is: https://www.mencap.org.uk/advice-and-support/health/dont-miss-out/dont-miss-out-guides

The resources include:

  • main guide about joining the learning disability register and why it’s so important;
  • guide for supporters of people with a learning disability about the register, Annual Health Checks, and Summary Care Records;
  • template easy read letter to complete and give to your doctor about joining the learning disability register;
  • easy read guide about joining the learning disability register and why it’s important.

There’s also a really snappy animation (on the Mencap website):


We would be very grateful for your support in sharing this with your networks. Mencap is promoting the campaign nationally, as well as doing some community based projects with groups (more information available, if you want to know what’s happening in your region.)

We are always looking for case studies and blogs which reinforce the campaign, so please do share any great stories. 

Thanks and best wishes

Miranda Askew

Senior Stakeholder Manager

NHS England Learning Disability Programme

Email: Miranda.Askew@nhs.net 

NHS England

6th Floor | Skipton House | 80 London Road | London | SE1 6LH



High quality care for all, now and for future generations

e-End of Life Care for All – UPDATE





e-ELCA update…

 Access – OpenAthens

Health Education England e-Learning for Healthcare (HEE e-LfH) is adding the e-LfH Hub and its thousands of e-learning sessions to the list of OpenAthens resources to make it easier for certain groups of the health and social care workforce to access e-LfH’s e-learning.

OpenAthens is a service that allows people to access a series of online resources free of charge with just a single OpenAthens account.

The OpenAthens eligibility criteria, which are managed by NICE, cover anyone working directly with NHS patients. Anyone working directly on the development and/or delivery of training materials for either NHS staff or NHS patients within an organisation that provides NHS-commissioned care or commissions care for NHS patients in England is also covered. This includes charities, voluntary organisations, local authorities, arm’s length bodies and healthcare students.

For more detailed information on the eligibility criteria, and to register, please visit: www.nice.org.uk/about/what-we-do/evidence-services/journals-and-databases/openathens/openathens-eligibility

Access – Care homes and hospices

If you work within a care home or a hospice access to End of Life Care for All (e-ELCA), and other e-LfH programmes, is now really simple. Each care home and hospice has its own registration code and once your manager has requested this, you can use it to register for free access here: http://portal.e-lfh.org.uk/support/ There is also an instruction leaflet available should you need one.

New session – Symptom Management for the Dying Adult

We have recently developed a new session within the e-ELCA programme ‘Symptom Management for the Dying Adult’. This session provides a concise guide to the management of physical symptoms that commonly arise when a person is in the last few days to hours of life. This session is for doctors in training (all specialties), core medical and GP trainees, nurses in the community, hospitals and care homes and post registration pharmacists. It may also be useful to more experienced doctors who wish to refresh their knowledge in this area.

GMC – End of Life Care campaign

The General Medical Council (GMC) want to help doctors apply their guidance on end of life care in practice and deliver good care to patients reaching the end of their life. As part of a range of suggested learning materials the GMC has recommended the e-ELCA session: 05_18 Treatment and care towards the end of life: good practice in decision making. The session explains the key principles in the guidance and helps you to apply them to some of the common challenges that arise when caring for patients towards the end of their life.

For more information visit:


e-ELCA on the road…

You may have met the e-ELCA team at various events and conferences over the last couple of years. We are attending the National Council for Palliative Care (NCPC) conference in London on 10 March 2017and the Association for Palliative Medicine (APM) Supportive and Palliative Care Conference in Belfast from 29-31 March 2017.

Finally, as part of the continuing review of our programmes all 158 e-ELCA sessions have been fully reviewed and updated.

For more information visit: http://www.e-lfh.org.uk/programmes/end-of-life-care/