Public Health Wales evidence submission: Re: The National Assembly for Wales’ Health and Social Care Committee inquiry into progress made to date on implementing the Welsh Government’s Cancer Delivery Plan.
1 Detecting cancer quickly
The aim of the Cervical Screening Programme in Wales (Cervical Screening Wales) is to reduce incidence of and morbidity and mortality from invasive cervical cancer. From the 1st September 2013 women aged 25-50 have been invited three yearly and women aged 50-64 are invited five yearly. This reflects the change in WG policy announced in January 2013.
The coverage (proportion of eligible women with an adequate smear result in the past five years) of eligible women aged 25 to 64 years in Wales is good, and for the period 1 April 2012 to 31 March 2013 this was 79.3%. This is just below the target of 80%. In Wales the incidence of cervical cancer has decreased over the last decade to an European Age Standardised Rate of 7.8 new cases per 100,000 women in Wales in 2011. This is the lowest incidence of cervical cancer in the UK.
The aim of the Breast Screening Programme in Wales (Breast Test Wales) is to reduce mortality from Breast Cancer. Women aged 50-70 years are invited every three years; women aged over 70 years can self refer. For the period 1 April 2012-31 March 2013, uptake of screening was 71.5%, which meets the standard of 70%. For this period a total of 816 cancers were detected by Breast Test Wales in women screened aged 49 and over. This represents 9.8 cases per 1000 women screened. Breast Test Wales exceeds national performance standards and targets for cancer detection, and has the highest cancer detection rate of any UK breast screening programme. The overall standardised detection ratio was 1.75 (standard 0.85 and target 1.0).
The aim of the Bowel Screening Programme in Wales (Bowel Screening Wales) is to reduce mortality from bowel cancer by 15% in the group of people invited for screening by 2020. Men and women aged 60 to 74 years are invited for bowel screening every two years. For the period 1 April 2012-31 March 2013 the uptake was 48.2% which was lower than the standard of 60%.
There is evidence of inequity in screening uptake for the cancer screening programmes, where uptake is lower in more deprived groups. For the period 1 April 2012 to 31 March 2013 the uptake for bowel screening was 54.4% in the least deprived groups compared to 39.1% in the most deprived groups. There is a similar pattern in the breast screening with 76.1% uptake in the least deprived compared to 62.9% in the most deprived; and cervical screening with coverage for 25-64 year old of 83.2% in the least deprived group compared to 74.9% in the most deprived group. Reducing inequity is a priority for screening division.
Bowel Screening Wales has the lowest uptake of the cancer programmes and has established an Uptake group to tackle the issue. The group is looking across the population and also at groups where uptake is known to be low. Possible interventions are being considered at strategic level, operational level, and within routine programme activity and will be evaluated.
For example, in February 2014 a bowel screening campaign was launched in Wrexham in partnership with Wrexham Local Service Board aimed at increasing the uptake for bowel screening in the area (current uptake 44%). There was a launch attended by Mayor and Mayoress of Wrexham and the Tenovus Choir on the 14th February and the coordinated campaign is being promoted by radio, social media, newspaper and posters including banners on buses. The effectiveness of the intervention will be evaluated.
A literature review has been carried out to explore how best to effectively increase uptake and decrease inequities in uptake. The evidence centres around having should be clear, consistent messages which are delivered in a way that is appropriate to the audience. A set of key messages has been developed for each of the adult programmes, and links made with Communities First groups, Local Public Health Teams, Community Pharmacies and other partners to explore the best way of communicating these messages.
Uptake of bowel screening in Wales has risen consistently over the past five months, and for February 014 stood at 60%- meeting the target for the first time since the programme’s inception.
The Screening Engagement Team (SET) works across the cancer screening programmes. Their role is to raise awareness of the screening programmes, promote informed choice by informing the eligible population about the benefits and harms, and encourage people to make an active decision about taking part in screening. The SET work at both a strategic level, engaging with partners and the programmes and providing direction and guidance, but also on an operational level with members actually going out to communities for example and delivering training to the public and health professionals.
The team works extensively with ‘harder to reach’ groups. A summary of current activity is below.
The team is working toward meeting the objectives of the Strategic Equality Plan. There are a number of work streams currently underway:
The BTW Packs have been reviewed and are in the process of being uploaded to the BTW Website. The team are working with local Learning Disability (LD) teams to recruit service users with LD to develop digital stories which can be used for health education and service improvement.
Macmillan employs an LD Specialist Nurse to scope, develop and improve services for service users with LD specifically in relation to cancer services. We are members of the steering group for this project. Early discussions are looking to partnership work on the following work streams:
· Developing a standardised bowel desensitization kit which can be used all Wales by LD teams
· Improving information provision for service users with LD
· Developing a suite of LD specific digital stories for health education and service improvement
· Improving links with local teams
These are early stage discussions.
Work is well underway to support transgender service users. To date:
· An action plan has been developed to support this group
· Members of the transgender community have met with cervical screening nursing team and some Heads of Programme
· Two transgender Digital Stories have been co produced. The female to male (FTM) story has been launched on You tube and is now live. The second male to female (MTF) story has not yet been approved and is currently at the editing stage
· A draft leaflet has been developed. The draft wording is now ready for external review. The team will be meeting with local LGBT and Trans specific networks to get feedback on this resource in the next few weeks
· A set of transgender specific ‘Frequently Asked Questions’ are in their final stages of development. Once agreed by Core PIG they will go to external groups for review
· A task and finish group will be established by the Centre for Equality and Human Rights to look at developing a resources to support staff. This resource will be developed focussing on acceptable terminology
· The team has been invited to attend the All Wales Gender Dysphoria Partnership Board. This group has only met twice so is in its early stages. However at the last meeting a number of work streams were initiated which may be relevant to division in due course
· The team are improving their links with the different networks and although this work is slow it is improving. The team were invited to attend the annual ‘Sparkles’ event which enabled the team to network with members from the transgender community. The team delivered a presentation on the work they have undertaken in relation to the trans project at a recent best practice day. It is hoped that some joint event can be delivered to support the Screening for Life Campaign however, no firm plans have been made as yet
Working with BME groups is still ongoing with the team accessing information sessions and appropriate events. Two focus groups have been undertaken with BME groups in relation to BSW Uptake work.
A divisional task and finish group was established to look at the sensory loss provisions for service users within screening. The outcome of this group was that further divisional scoping was needed and that these findings could be taken to the Centre for Equality and Human Rights, stakeholder reference group for consideration. This stakeholder group was instrumental in the development of the initial sensory loss standards which were recently launched. This group consists of key sensory loss stakeholders/organisations. A workshop is scheduled to be held at the end of March to discuss the findings of the scoping and to see if there are any improvements that the division can make to support service users with sensory loss. A report will be presented to the sensory loss task and finish group for consideration.
The team has been working with John Bradley from the Public Health Wales, Older Persons and Vulnerable Group Inequalities Team (OPVGIT). The team are developing a training package similar to the one which was developed for use with Harm Reduction Teams across Wales but specific to Homelessness. It is the intention to run a small pilot to train key workers in relation to screening. This will involve basic training on screening covering the different programmes, case studies, frequently asked questions and signposting information. This pilot will initially be run with Cymorth staff which is a national homeless charity. The training package is currently being developed and the training will be scheduled to run in May.
A project to improve awareness of screening with the Gypsy and Traveller community is currently underway. The team is consulting with Gypsy and Traveller link workers and Gypsy and Traveller communities across Wales to understand what information, training and support is needed to improve knowledge and awareness of screening. The team will also consult with staff from Screening Division to identify if there are any specific training needs in relation to the Gypsy and Traveller community. Following the consultation, an action plan will be drawn up to take forward this work.
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Evidence to the National Assembly for Wales Health and Social Care Committee Inquiry into Progress made to date on implementing the Welsh Government’s Cancer Delivery Plan |
Agencies: Macmillan Cancer Support/Public Health Wales |
Author: Caroline Walters, Macmillan Cancer Information Strategic Lead, Public Health Wales |
Introduction
Background
3. High quality information and support (by which we mean content - which may be spoken, printed or digital- available at the right time, in the right format, which is quality assured and offered with a level of support required) is an essential component of quality healthcare and a pre-requisite to effective self-care. The case for improving the co-ordination and delivery of cancer patient information in Wales, as a key enabler to the delivery of the CDP and changes to cancer care in Wales, is compelling as is detailed in brief below;
4. High quality information and support is central to self-care yet the current approach to information provision may widen health inequalities and act as a barrier to effective self-management - The growing cancer population and financial pressures necessitates greater self-management. However the current issues the project has revealed in relation to the development, co-ordination and delivery of patient information in Wales mean that many people cannot consistently access information and support which meets their individual needs and thus have the tools to self-manage. This is exacerbated by the age and socio-economic profile of the cancer population – a profile which is likely to indicate lower health literacy levels and therefore an increased need for information materials which are accessible and available in a range of formats.
5. High quality information and support is closely linked to a positive patient experience, yet a number of the poorer scores given by patients in the 2013 Welsh Cancer Patient Experience Survey are in respect of lack of information given to them about key aspects of their condition, treatment and care - When patients are asked what really matters to them in terms of their healthcare experience, good information is consistently prioritised across conditions and settings[2]. Yet the recent Welsh Cancer Patient Experience Survey revealed significant issues in relation to patient information with particular concerns around the provision of easy to understand written information at diagnosis, information for families following discharge and information about the long term side effects of cancer diagnosis and treatment.
Response to the inquiry terms of reference
Is Wales on course to achieve the outcomes and performance measures, as set out in the Cancer Delivery Plan, by 2016?
The level of collaborative working across sectors, especially between the NHS and third sector, to ensure patients receive effective person-centred care from multi-disciplinary teams.
Recommendations
ANNEX A Table 1: Results of Welsh Health Boards and Trusts in relation to key patient information questions
Question |
Abertawe Bro Morgannwg |
Aneurin Bevan |
Betsi Cadwaladr |
Cardiff and Vale |
Cwm Taf |
Hywel Dda |
Velindre |
Wales |
Q14 Given easy to understand information regarding the type of cancer |
59% |
62% |
64% |
62% |
59% |
61% |
65% |
62% |
Q19. Definitely told about future side effects |
52% |
58% |
53% |
54% |
53% |
51% |
61% |
55% |
Q60. Staff definitely gave family all information needed |
52% |
61% |
61% |
55% |
53% |
53% |
61% |
57% |
Source: Wales Cancer Patient Experience Survey 2014
ANNEX A Table 2: Results in relation to key information questions by tumour type
Question |
breast |
Colorectal/lower gastro |
lung |
prostate |
Brain/CNS |
gynaecological |
Haematological |
Head and neck |
Skin |
Upper gastro |
urological |
sarcoma |
Q13 completely understood the explanation of what was wrong |
81% |
78% |
75% |
80% |
61% |
73% |
56% |
77% |
68% |
68% |
75% |
63% |
Q14.Given easy to understand written information about the type of cancer |
69% |
62% |
57% |
78% |
32% |
49% |
66% |
50% |
60% |
48% |
57% |
34% |
Q19 Definitely told about possible future side effects of treatments |
58% |
56% |
55% |
65% |
64% |
52% |
52% |
55% |
44% |
49% |
45% |
58% |
Source: Wales Cancer Patient Experience Survey 2014
Progress made in implementing the Cancer Delivery Plan in Wales
The Welsh Cancer Intelligence and Surveillance Unit (WCISU)
WCISU is responsible for the national cancer registry for the resident population of Wales wherever diagnosed or treated. Our primary role is to provide Wales with information on the trend and analysis of cancer incidence, mortality and survival. Increasingly we are providing additional analysis such as stage at diagnosis and act in an information and advisory capacity regarding the cancer health intelligence of the Welsh population. The latest official statistics using 2012 diagnosis data was published on 9th April 2014. A summary report of population cancer incidence, mortality and survival “Cancer in Wales” is attached for information.
Incidence
· The number of diagnoses of cancer fell in 2012; however the general trend over the past ten years has been increasing.
· Men continue to have a higher number of cancers diagnosed compared to women.
· Age is a major risk factor for a cancer diagnosis.
· The incidence rate of cancer is a fifth higher in the most deprived areas of Wales compared to the least deprived.
· Lung cancer is one of the most common cancers in Wales. Although it has shown a slight decreasing trend overall, numbers in women increased by over a third in the last ten years. The annual number of lung cancer cases in women is now approaching that in men.
Mortality
· Mortality rates for all cancers continue to decrease.
· Lung cancer was the most common cancer death cause in Wales in 2012 and is more than colorectal and breast cancer deaths combined.
· Mortality is now 50% higher in the most deprived areas of Wales compared to the least deprived areas.
Survival
· Survival is relatively poor for Wales in comparison with Europe; however Wales has shown the fastest improvement in recent survival rates of all the UK countries.
· Cancer survival is worse in men compared to women.
· There is a large gap in five year relative survival rates in Wales for those living in the most deprived areas compared to the least deprived.
· There is large variation in survival rates between different cancer types; the survival rate is very low for cancer of the liver, lung and pancreas and is high for cancer of the testes, breast, melanoma and prostate.
· The EUROCARE 5 study results, published in December 2013, show that the UK and Ireland have amongst the lowest survival rates for most cancers along with Denmark and Eastern European countries. There are particularly poor survival rates for many smoking related cancers across Europe, but especially in Wales and the rest of the UK.
Stage at diagnosis
· WCISU has provided the stage at diagnosis analysis for the Cancer Delivery Plan annual report using the timeliest data source, Canisc; an activity based clinical management system used by MDTs across Wales.
· Clinical teams across Wales are awaiting the development of Canisc to support the collection of stage at diagnosis for all cancer sites in accordance to the latest international staging classifications.
· There has been an overall improvement in the completeness of stage at diagnosis over the last two years. Completeness is variable across tumour sites; lung, breast and colorectal have high completeness.
30 day post treatment mortality
· WCISU are engaged in the ongoing discussions of the Cancer Implementation Group Information Sub Group to agree and finalise the methodology for 30 day post treatment mortality for a) chemotherapy b) surgery. Resolutions are required to the existing technical difficulties and clinical consensus to move this performance measure forward.
Inequalities gap
· There has been no improvement in decreasing the inequality gap for both cancer incidence and mortality.
· For cancer incidence the deprivation gap increased from 67 per 100,000 population in 2000-2004 to nearly 80 per 100,000 population in 2008 - 2012.
· For cancer mortality the deprivation gap increased from 77 per 100,000 population in 2000-2004 to 79 per 100,000 population in 2007 - 2011.
· Other known risk factors related to deprivation besides age include smoking, alcohol consumption, obesity, low fruit and vegetable intake, low physical activity, sun/UV and sunburn exposure during the life course.
[1] Macmillan Cancer Support. (2012). Local Route Maps. London: Macmillan Cancer Support.
[2] Robert, G. a. (2011). What matters to patients? Project Report for the Department of Health and NHS Institute for Innovation and Improvement. Coventry: NHS Institute for Innovation and Improvement.
[3] Swain D, Ellins J, Coulter A, Heron P, Howell E, Magee H,. (2007). Accessing Information about Health and Social Services. London: Picker Institute Europe.
[4] Patient Information Forum. (2013). Making the Case for Information - the evidence for investing in high quality health information for patients and the public. London: Patient Information Forum.
[5] Sutherland, L. &. (2008). The quest for quality: Refining the NHS reforms. London: Nuffield Trust.
[6] NHS Litigation Authority. (2012). Factsheet 2: Financial Information. London: NHS Litigation Authority
[7] Patient Information Forum. (2013). Making the Case for Information - the evidence for investing in high quality health information for patients and the public. London: Patient Information Forum.
[8] Mulley, T. &. (2012). Patients’ Preferences Matter: stop the silent misdiagnosis. Cardiff: King's Fund.
[9] Walters, C. (2013). National Cancer Patient Information Strategy - Current Services Review. Cardiff: Public Health Wales/Macmillan Cancer Support