NICE recommends novel gene therapy treatment for rare inherited eye disorder

NICE | September 2019 | NICE recommends novel gene therapy treatment for rare inherited eye disorder

NICE has recommended a novel gene therapy for a rare inherited eye disorder; Voretigene neparvovec is the first licensed gene therapy for vision loss caused by RPE65-meidated inherited retinal dystrophy.

NICE has released the draft highly specialised technologies guidance for people with vision loss caused by inherited retinal dystrophy from confirmed RPE65 gene mutations and who have enough viable retinal cells.

The RPE65 gene provides instructions for making a protein that is essential for normal vision. RPE65-mediated inherited retinal dystrophies are rare and serious. Usually diagnosed in childhood, they involve progressive loss of vision which ultimately leads to near-total blindness and severely affects the quality of life of people with the condition, their families and carers. Current treatment is supportive care, such as the use of low-vision aids (Source: NICE).

 

Full details are available from NICE

Boost strength and balance, says new exercise guidance

UK Chief Medical Officers  | September 2019|  UK Chief Medical Officers’ Physical
Activity Guidelines 

The Government has published new exercise guidance-UK Chief Medical Officers’ Physical Activity Guidelines- while the guidelines are broadly consistent with previous guidance, they allow for some flexibility in achieving the recommended levels of  physical activity for each group. For the first time the publication includes guidance for pregnant women new mums, and emphasises that activity does not need to be in ten minute bursts.

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This report emphasis the importance of regular activity for people of all ages, and for disabled adults.
It also underlines the importance of all age groups participating in a range of different activities.

The new guidelines reinforce the importance of strengthening exercises both for all age groups and highlight the additional benefit of balance and flexibility exercises for
older adults.

The guidelines follow a life course approach with a chapter dedicated to each age group (under-5s, Children and Young people (5-18 years), Adults (19-64 years), and Older Adults (65+ ) (Source: UK Chief Medical Officers).

UK Chief Medical Officers’ press release here 

UK Chief Medical Officers’ Physical Activity Guidelines 

In the news:

OnMedica  Boost strength and balance, says new exercise guidance

Guardian  Even a few minutes’ exercise is good for you, new guidelines state

The Telegraph  No such thing as too little exercise, says Chief Medical Officer, as ten minute minimum is scrapped

BBC News  Strengthen muscles as well as heart to stay fit and healthy, say top doctors

SCIE: Place-based leadership development programmes

Social Care Institute for Excellence | September 2019 | Place-based leadership development programmes

Social Care Institute for Excellence (SCIE) has published its Place-based leadership development programmes, the case studies provides an overview of the impact of two innovative programmes which aim to develop systems leaders and place-based, collaborative forms of leadership: Frimley 2020 Leadership Programme and Leaders in Greater Manchester (LiGM).

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Key messages

  • The Frimley 2020 and LiGM programmes had positive impacts on participants, enhancing participants’ skills, confidence and capabilities and encouraging a more outward-looking, place-based approach to leadership. It was less clear what the longer-term impacts of the programmes were on organisations and systems.
  • The two programmes, with their focus on collaborative systems leadership and place-based action, strongly align to the plans in the NHS Long Term Plan to develop integrated care systems. Both programmes offer examples, tools and approaches that could be rolled out successfully to other ICSs and areas seeking to develop place-based, collaborative forms of leadership.
  • Involving professionals from different organisations was seen to be a strength of both programmes, although participants felt that more could have been done to ensure the right mix of people took part.
  • It is important that future programmes continue to, or develop further the opportunity to, offer places to a wide range of stakeholders, and importantly, make funding available for people who are not employed by the NHS, but who are working to improve health across the wider community.
  • Whilst both programmes had a strong focus on local communities, participants felt that greater levels of co-production and citizen involvement were needed in future programmes.
  • Participants welcomed the opportunity the programmes gave to provide people with a network of peers to connect with. Future place-based leadership programmes should set out plans for how they will encourage the development of peer networks, and how they will be sustained beyond the life of the programmes.

Further details available from SCIE 

Social prescribing link worker welcome pack

NHS England | September 2019 | Social prescribing link worker welcome pack

NHS England has published Social prescribing link worker welcome pack, the pack includes useful information to help link workers in primary care networks find out more about their role and what support is available. 

Social Prescribing Link Worker welcome pack – web version

Social Prescribing Link Worker welcome pack – version for download

WHO: Stronger focus on nutrition within health services could save 3.7 million lives by 2025

World Health Organization | September 2019 | Stronger focus on nutrition within health services could save 3.7 million lives by 2025

Health services must integrate a stronger focus on ensuring optimum nutrition at each stage of a person’s life, according to a new report released by the World Health Organization (WHO). It is estimated that the right investment in nutrition could save 3.7 million lives by 2025.

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Image source: apps.who.int

“In order to provide quality health services and achieve Universal Health Coverage, nutrition should be positioned as one of the cornerstones of essential health packages,” said Dr Naoko Yamamoto, Assistant Director-General at WHO. “We also need better food environments which allow all people to consume healthy diets.”

Essential health packages in all settings need to contain robust nutrition components but countries will need to decide which interventions best support their national health policies, strategies and plans.

Key interventions include: providing iron and folic acid supplements as part of antenatal care; delaying umbilical cord clamping to ensure babies receive important nutrients they need after birth; promoting, protecting and supporting breastfeeding; providing advice on diet such as limiting the intake of free sugars in adults and children and limiting salt intake to reduce the risk of heart disease and stroke (Source: WHO).

Read the full news release from WHO 

 

Prevalence, severity, and nature of preventable patient harm across medical care settings: systematic review and meta-analysis

Full reference: Panagioti, M. et al. | 2019| Prevalence, severity, and nature of preventable patient harm across medical care settings: systematic review and meta-analysis| 

The BMJ has published  a systematic review and meta-analysis of  preventable patient harm across a range of settings, the review is available to read in full from the BMJ

Abstract

Objective To systematically quantify the prevalence, severity, and nature of preventable patient harm across a range of medical settings globally.

 

Design Systematic review and meta-analysis.

 

Data sources Medline, PubMed, PsycINFO, Cinahl and Embase, WHOLIS, Google Scholar, and SIGLE from January 2000 to January 2019. The reference lists of eligible studies and other relevant systematic reviews were also searched.

 

Review methods Observational studies reporting preventable patient harm in medical care. The core outcomes were the prevalence, severity, and types of preventable patient harm reported as percentages and their 95% confidence intervals. Data extraction and critical appraisal were undertaken by two reviewers working independently. Random effects meta-analysis was employed followed by univariable and multivariable meta regression. Heterogeneity was quantified by using the I2 statistic, and publication bias was evaluated.

 

Results Of the 7313 records identified, 70 studies involving 337 025 patients were included in the meta-analysis. The pooled prevalence for preventable patient harm was 6%. A pooled proportion of 12%  of preventable patient harm was severe or led to death. Incidents related to drugs and other treatments  accounted for the largest proportion of preventable patient harm. Compared with general hospitals (where most evidence originated), preventable patient harm was more prevalent in advanced specialties.

 

Conclusions Around one in 20 patients are exposed to preventable harm in medical care. Although a focus on preventable patient harm has been encouraged by the international patient safety policy agenda, there are limited quality improvement practices specifically targeting incidents of preventable patient harm rather than overall patient harm (preventable and non-preventable). Developing and implementing evidence-based mitigation strategies specifically targeting preventable patient harm could lead to major service quality improvements in medical care which could also be more cost effective.

 

What people have told Healthwatch about health and social care: April to June 2019

Healthwatch | September 2019 | What people have told us about health and social care: April to June 2019

In their latest review, Healthwatch looks at the benefits of providing personalised care and why being sensitive to people’s individual needs matter.

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The review identifies 7 areas why people explain being treated as an individual matters

  • Privacy

    When sensitive information is discussed by health professionals out in the open, it can leave people feeling embarrassed. For example, young people worry about discussing their issues at sexual health clinic receptions.

  • Dignity and respect

    Dignity and respect can mean different things to different people. By listening to people’s preferences, services can make sure people feel comfortable. For example, some people prefer to be treated by health professionals of the same gender for cultural reasons.

     

  • Fear and anxiety

    Fear and anxiety can stop people from using services. Worrying about crowds, fearing treatment, or not being able to physically attend an appointment can all be barriers. Services can take steps to ensure patients feel comfortable. For example, one phlebotomy service supported people who had a phobia of needles, which people said made blood tests less daunting.

     

  • Individual circumstances

    Think about the challenges your patients may face. For example, we’ve heard weight can be a barrier to accessing some services, such as NHS dentists. Standard dental chairs have a weight limit, which can restrict patients above this threshold.

  • Convenient appointments

    For people with speech issues, a lack of fluency in the English language, or a sensory impairment, a ten-minute GP appointment isn’t always long enough. GP surgeries should advise patients who need extra time to book double appointment slots to ensure good communication.

    It can also be difficult to attend appointments which clash with work commitments if services don’t provide appointments outside regular working hours. For others getting to services in the first place can be an issue if transport links are unavailable.

     

  • Memory can be an issue

    Poor memory can make it difficult to remember when to attend an appointment. This can affect people with dementia, those struggling with stress, or facing side effects of medication. Making sure this issue is flagged on patient records and having an effective book and reminder system in place helps.

  • Sensory impairments

    People with sensory impairments can find it complicated to book and attend appointments. For example, we heard from people who are blind who received letters from hospitals asking them to book an appointment, which they couldn’t read. Deaf people have also said they struggle to consistently get an interpreter for appointments (Source: Healthwatch)

Read the Healthwatch press release here

What people told us about Health and Social Care