Updated COVID-19 advice for clinically extremely vulnerable

The Government has announced people classed as 'clinically extremely vulnerable' will receive new advice tailored to local COVID alert levels.

Guidance will be tied into the new local COVID alert levels framework, meaning those at the highest risk of serious illness from the virus will receive specific advice depending on the level of risk in their local area.

The clinically extremely vulnerable group includes those with specific health conditions affecting the immune system, certain cancers and organ transplant recipients.

GOV.UK

Understanding the impact of COVID-19 on those who access care and support

Think Local Act Personal has published a rapid evidence review and recommendations based on the experiences of those accessing care and support during the coronavirus pandemic.

The review highlights a number of impacts of the pandemic, including:

  • A fear of catching COVID-19 leading to reluctance to access support for other health concerns
  • Overarching challenges around communication, both locally and nationally, between councils and people who access care and support and perceived delays to government guidance
  • Cancellations of respite and day services adding to increased pressures

It also highlights concerns raised by specific groups.

These include BAME individuals who feel frightened about the disproportionate impact of COVID, individuals experiencing digital exclusion and shielders receiving conflicting advice.

The report makes 15 recommendations around key areas including production of guidance, communication, co-production, addressing inequality, improving mental health and going digital.

Click on the link below to read the report in full.

TLAP

Inquiry calls for urgent improvement in endometriosis care

An inquiry has found it takes an average of eight years to receive an endometriosis diagnosis from onset of symptoms – the same amount of time as a decade ago.

The all-parliamentary group inquiry found more than 58% of people had visited their GP more than 10 times prior to diagnosis. It also found:

  • 72% were not given any written information when diagnosed. This left them without the knowledge and advice they needed to make informed choices about their healthcare.
  • 58% would have liked fertility support and treatment but were not offered it.
  • 90% would have liked access to psychological support but were not offered it.

The report makes several recommendations to improve diagnosis time, increase access to specialist support, raise awareness and decrease inequalities.

These include recognising endometriosis as a chronic condition, provision of patient information, updated NICE guidance and wider public awareness and education campaigns on menstrual health.

Endometriosis UK

PIF member wins international health award

PIF member and patient advocate Trishna Bharadia has won the Healthcare Collaborator Award at the WEGO Health Awards.

Trishna's work as a health advocate includes speaking at events and conferences, writing, consultancy, media outreach and information/services development.

She was recently a member of our Covid Choices expert panel.

Among her charitable roles, Trishna is an ambassador for MS Society UK, ADD International and Lyfebulb. 

Speaking about her win, Trishna said: “I was completely shocked to receive the news that I had won. 

"The Healthcare Collaborator Award is given to someone who has excelled in partnering with multiple stakeholders within healthcare, such as clinicians, the pharma industry, patient organisations and charities, regulators and academia. 

"I’ve always believed that we must all work together to improve the patient experience of healthcare and it’s wonderful to have had my work recognised in this way."

WEGO Health

Inequalities in relation to COVID-19

A rapid evidence review into inequalities in relation to COVID-19 and their effects on London has been published by the Greater London Authority (GLA).

The GLA commissioned the University of Manchester to document and understand the impact of COVID-19 on those with protected characteristics, as well as those living in poorer, or more precarious, socioeconomic circumstances.

The review identifies substantial inequalities in relation to the impacts of the coronavirus pandemic. 

This is both in terms of risk of COVID-19 infection, complications and mortality, and in terms of the negative economic, social and psychological consequences of Government policies to mitigate the health impacts of the pandemic. 

The review highlights several key inequality areas, including how language barriers affect access to information and health and social care.

Greater London Authority

Patient experience of NHS and social care services

Nuffield Trust's latest QualityWatch indicator update uses data from national patient surveys to look at patient experience prior to the pandemic.

The update looks at several areas of patient experience, including overall satisfaction, confidence and trust and access to GP services.

Between 2018 and 2020, the proportion of patients who ‘definitely’ had enough support from local services or organisations to help them manage their long-term health condition(s) decreased from 43% to 40%.

Only 70% of patients aged 16 to 24 ‘definitely’ or ‘to some extent’ felt supported to manage their long-term condition in 2020, compared to 84% of respondents aged 65 to 74.

In 2018/19, a smaller proportion of people from the most deprived areas (52%) felt supported to manage their long-term condition compared to people from the least deprived areas (63%).

Nuffield Trust

People’s experiences of Self-directed Support

PIF member the ALLIANCE and Self Directed Support Scotland have published research into the Self-directed Support (SDS) and social care experiences of more than 600 people.

My Support, My Choice, a project funded by the Scottish Government, includes evidence, analysis and recommendations for improvement to SDS/social care in the aftermath of the COVID-19 pandemic.

The report makes several recommendations, many of which echo other independent reviews of SDS, including:  

  • Targeted work is needed to ensure all population groups can exercise their right to make meaningful choices between SDS options, particularly women, people with learning disabilities, BAME people, people with experience of homelessness and people living in rural areas.
  • Improvement is needed to guarantee short waiting times to help people avoid unnecessary stress and anxiety, deterioration in their physical and mental health, and from reaching crisis point.
  • People value and use independent advocacy, advice and support organisations, and these services need sustainable resources to continue their important role.

Click on the link below to read the report in full.

ALLIANCE  

NICE draft guidance recommends siponimod for treating secondary progressive multiple sclerosis

New NICE draft guidance recommends siponimod, also called Mayzent and made by Novartis, for treating secondary progressive multiple sclerosis.

Siponimod, which is taken orally, is licensed to treat secondary progressive MS in adults with evidence of active disease. 

Around 11,000 people with secondary progressive MS will now be eligible for treatment with siponimod.

NICE

Webinar: Patient. Noun. Adjective

National Voices is hosting a free online launch event for the publication of its latest report on understanding the experience of waiting for care.

The webinar will include the key findings and presentations from the panel including: Prof Helen Stokes-Lampard PhD FRCGP, Academy of Medical Royal Colleges; Siva Anandaciva, The King's Fund; and Rachel Burnham, Guy’s & St Thomas’ NHS Foundation Trust.

The webinar takes place from 1pm to 2pm on Tuesday 27 October.

National Voices

The experience of older people instructed to shield or self-isolate during COVID-19

A new report summaries the experiences of  more than 5,800 older people who were instructed to shield or self isolate during COVID-19.

The English Longitudinal Study of Ageing (ELSA) COVID-19 Substudy found high risk participants experienced higher levels of depression, anxiety, and loneliness, and reduced quality of life compared with others.

This was particularly marked among those who were isolating. 

Poor mental health was not related to reductions in social contacts, but there were higher levels of worry about obtaining food and other essentials. 

Physical activity was reduced and sleep impaired among high risk participants. 

ELSA says, if future outbreaks of COVID-19 require the reintroduction of shielding and avoidance of face-to-face contact, efforts should be made to allay concerns and encourage health promoting behaviour to avoid further impairment of the quality of life and mental health. 

ELSA

The benefits of adopting a user-centred design approach

In this article, Matt Edgar, associate director of design and user research at NHS Digital, explores the benefits of adopting a user-centred design approach, especially during a pandemic. 

He outlines how NHS Digital rapidly introduced new services at the start of the pandemic and why it is important to make sure any new product delivers better outcomes.

Digital Health

Interviewing for health case studies

In this blog, PIF member Anneliese Levy shares her three top tips for interviewing health case studies.

She also shares why including case studies can make a big difference to your audience, including helping reduce isolation and peer learning.

Thoughtful Content

Study: Properties of patient-reported outcome measures on medication adherence

A new study aims to evaluate the quality of patient-reported outcome measures (PROMs) used to measure medication adherence.

The systematic review identifies 121 unique medication adherence PROMs from 214 studies.

It is hoped the review will assist clinicians and researchers in selecting suitable PROMs to measure medication adherence among patients. 

The authors suggest future research may consider validating measurement errors and cross-cultural validity to further improve the insights on the measurement properties of these PROMs.

JMIR

See also