by BSPGHAN | Apr 13, 2020 | News
Dear all
I hope this finds you all well and spending time to rest and restore your batteries over the long weekend.
The anticipation of working in different ways and the pressure of making new judgements for patient care has been stressful.
The calmness of the NHS and other frontline carers and their leaders has been remarkable in the face of constant change and education. Their anxiety about risks, protecting themselves and their loved ones at home is real. We hope that increasing knowledge of the virus, on keeping a safe distance and being as well protected as possible, gives them some of the peace of mind that they need.
It is truly touching to see the tributes for key workers and the acknowledgement of the vital roles that all workers play.
Keep cascading the message to parents that we are open for “business as usual” as per the RCPCH recent campaign (see link) and keep good records of those who need to be seen later on.
https://issuu.com/joballrcpch/docs/covid19_advice_for_parents_when_child_unwell_or_in
I am personally grateful to all the Bspghan members who have been so supportive and working hard to contribute to national initiatives and to make new guidance rapidly. A few examples are –
- Messages we sent to NHS leaders and RCPCH that we are worried about routine areas of care for children have been heard and received by government.
- We have helped the NHS identify and reach out to our most vulnerable patients.
- We have written tailored guidance for families and and IBD registry
- We have contributed towards rapid NICE guidance.
- We have suggested key conditions and timelines for recovery plans when routine services start opening.
- We have collaborated with stakeholders and charitable partners such as the BSG, BASL, CICRA,CCUK and CLDF who have have been supportive at achieving a common goal to advise, support and protect our families and staff.
The qualities that health professionals signed up to – sacrifice, patience, and tolerance have always been present but are clear in the acts of kindness and putting others first. Please give a particular thought to all ward based staff this weekend who are now “masked up” all day. My masked working this weekend has been in short bursts and uncomfortably hot. The ward nurses no doubt feel the same all day, but without complaint and they deserve a huge thanks.
This crisis has shown us that we can collaborate rapidly and work together, adapt, and break out of the silos that have existed in the NHS. Please also say a thanks to the IT crowds who have worked hard to bring in remote working and conferencing overnight.
Our thoughts go out to new staff as young medics have been hastily graduated and the retired staff who have returned. Our prayers are with them to stay strong and safe as their offers to support the NHS are not just token efforts.
We don’t know when this will be over. We hope that Covid testing and a vaccine will bring about change. The knocks and impact on sections of society will be enormous. Keep the connections and interactions going. Resolutions to be mindful of the legacies are not self righteous (in my mind); if we can maintain the current emphasis on social and cultural values, and the ability to learn and respond to change when the pressures is on us, things will be different and a bit better.
Reach out to those in your networks and beyond who may be in smaller teams. Again, a personal thanks to the friends who have helped me each in keeping you informed and connected. They are all leaders and I am enormously grateful.
Do get in touch if you have ideas, suggestions to share with others, or if you just need a chat.
Best wishes
Sue
BSPGHAN President April 12th 2020
by BSPGHAN | Apr 7, 2020 | IBD, News
Dear Members,
I do hope that this message finds you and your families and friends in continuing good health. It is an unsettling update today on the situation as it unfolds, as it is anticipated that there will be a rapid climb of Covid-19 to hit our hospitals and community services this week and next.
The focus has to be on pulling together as an NHS team to incident manage life threatening situations. When we emerge from this, there will be an important recovery phase to plan for.
Today, BSPGHAN has helped to kick start the process and contributed towards a Gap Analysis to feed back via the RCPCH to NHS E. This will help planners understand the need for time dependent diagnostic procedures and appointments for patients who are referred with commonest or high risk PGHAN conditions.
I am indebted to the BSPGHAN IBD Working Group and the Birmingham Children’s Hospital Nutrition nurses who have prepared the following guidance for members and the two items that you can use for information for parents/carers (attached):
1.BSPGHAN IBD Working Group statement for Health Care Professionals COVID_IBDWG_HCP
Coronavirus (SARS-CoV-2) and COVID-19 in children with IBD.
2.BSPGHAN IBD Working Group
PARENT/CARER INFORMATION LEAFLET COVID_IBDWG_Parents_Carers
Coronavirus (SARS-CoV-2) and COVID-19 in children with IBD.
3. Parent/ Carer Information Letter for families of children on home parenteral nutrition (authored by Birmingham Women’s and Children’s Hospital Nutritional Care Team nurses) Birmingham Letter for HPN patients
I would like to draw your attention to advice on practice and service provision for patients with IBD. Please mitigate risks of infection to theatre teams and preserve the PPE supply by limiting all but non emergency endoscopy for now.
Importantly, the parent carer guidance, 2. and 3. provides; –
a] paediatric-specific advice on shielding, helping professionals and families interpret what ” shielding” looks like for ‘At Risk’ children with IBD who are on immunosuppression and for those on Home PN, and
b] advice to avoid “late presentation” of febrile episodes in patients with IBD and on home PN.
I am mindful that I would not ordinarily send out a letter intended for families unless it had been ratified by Council, but in these exceptional circumstances, there is a need for rapid guidance, especially if there is confusion on ‘shielding’ advice. Please can I ask members to check the home PN letter and amend the content as you see fit for local use before you share it with your families.
The next few weeks may be tough for our teams. Please look after each other and make sure that you stay protected and remain safe.
Thank you to Jochen and the IBD working Group and a personal thanks to Elaine, Louise and Gemma and all our amazing IBD, Gastroenterology and Nutrition nurses who are working tirelessly to keep our families well informed, safe and well.
Best wishes
Sue, President of BSPGHAN
April 7th 2020.
by BSPGHAN | Apr 2, 2020 | Hepatology, IBD, News
Please see the following updates
- Guidance for health professionals with IBD or liver disease
https://www.bsg.org.uk/covid-19-advice/bsg-basl-rcp-guidance-for-healthcare-workers-with-moderate-risk-inflammatory-bowel-disease-and-liver-disease/
- Cvid19 UK IBD registry tool for adult patients
The tool aims to help identify and reach moderate and high-risk IBD patients.
The IBD registry tool is currently restricted to those are are aged 18 years or older but they are working on extending its use to under 18s
https://www.bsg.org.uk/covid-19-advice/covid-19-uk-ibd-tool-for-patients-is-now-live/
- COVID-19 – RCPCH trainee progression in the UK through 2020
https://www.rcpch.ac.uk/resources/covid-19-rcpch-trainee-progression-uk-through-2020
- EMA press releases related to COVID-19:
Please check EMA’s dedicated webpage on COVID-19 for the latest updates.
Thank you all again for your continued collaborative effort to support professionals and patients.
Best wishes
Sue Protheroe
e-mail President@bspghan.org.uk
President 2/4/20
by BSPGHAN | Mar 31, 2020 | News
Dear members
Please share this updated letter C0106 HPN COVID patient information_UPDATED_27 March with families of children on home parenteral nutrition. It outlines plans that home care providers are putting in place and changes that families may expect.
Please be aware of the latest advice.
“Keeping yourself safe”
“The government is regularly updating its guidance on at-risk groups. In light of the latest information your hospital teams now consider that patients on HPN are a high risk group, as you/your child have significant organ impairment (GI) and a central venous access device in place. This advice is endorsed by the British Society of Gastroenterology. It advises you to follow the guidance on ‘shielding’ stringently, as outlined by the government, and you are strongly advised to stay at home and avoid any face-to-face contact for at least 12 weeks in the first instance.
This can be challenging but the consensus is it is the best way to keep yourself/your child safe”.
Kind regards
Sue Protheroe
BSPGHAN President 31/03/20
e-mail President@bspghan.org.uk
