The Rapid Investigation Service (RIS) only started in 2020 and is for people whose symptoms may be cancer but are hard to diagnose. Once referred from their GP, a patient’s care is coordinated by the central RIS team made up of different medical professionals; and people access the service by phone or video call. Diagnostic tests are organised by the team but are carried out at the local hospital of people’s choosing. Referral into the service and then on to either onward referral or discharge should be within 28 days so people are given their results and next steps quickly. Here is a link to more information about the service and a patient information leaflet.
We would like people’s feedback on two different things. One way is to give feedback on a draft patient experience questionnaire. The other is, if you experience anxiety and/or depression, to have a phone interview to explore how the service might best support you if you were to ever have to use the service. More details about both of these are set out below.
Giving feedback on the draft questionnaire
To date we have been carrying out telephone qualitative interviews with people about their experience of the service and are about to report the results and recommendations from those first 41 interviews to the Rapid Investigation Service. We will share more about these and the service’s response shortly.
As more people come through the service, we need to move to a new phase of gathering people’s feedback and intend to do this through a survey that people can either complete online or as a hard copy. We would really appreciate your comments on the survey before it is used with patients.
The draft survey is based on a set of statements that follow a person’s journey through each step of the service and ask how they were treated. There are 26 questions, and from initial testing we have done it should not take more than 15-20 minutes to complete. If you would like to give your views here are some questions you might like to consider but please feel free to share any thoughts you have.
Here is the link to the draft survey: https://www.smartsurvey.co.uk/s/SIWJLX/. If you prefer to be emailed or sent a copy please contact Sue Newell on email@example.com or 07595424198.
We would welcome responses by the 9th April.
Giving your views about using the service if you have anxiety and/or depression
We would like talk with you about how the service might support people with anxiety and/or depression. People are telling us that they get good emotional support from the service but we really want to explore with you whether there is more that can be offered or that they haven’t already thought about. If you would like to know more about what is involved or to have an interview please contact Sarah Peters on firstname.lastname@example.org or 07966 927077.
Other ways people have already been involved
You might like to know that even before the service was up and running we engaged with people to ask their views on how the service should run, and we continue to do so. We went to GP surgeries and a community event for Black, Asian and Minority Ethnic people to ask what they thought. We also talked to patients using a similar service that they had accessed the service by phone. Most people were favour of proposed service because of the convenience and speed of getting results. Their feedback helped shape patient information and make sure the team prepared for things that people said might arise.
We continue to engage with groups of people that we know are more likely to find a service provided by phone or video call more difficult to use. For example, we are currently working with people with learning disabilities and their carers, and Deaf people to understand their perspectives. We then working with the RIS team to make sure the service is accessible and supportive.
Working with the Rapid Investigation Team, we know they are taking on board people's views and these are already making improvements for patient’s experiences. Click here to find out more.
We are pleased to announce the continuation of the Action Hampshire Communities Against Cancer project from January 2021, funded by the Wessex Cancer Alliance.
Communities Against Cancer is a project about cancer awareness and prevention. It is about helping people understand how to reduce their risk of cancer and how to stay healthy. It is also about helping people understand how important it is to contact their Doctor if they notice an unusual symptom. This may be particularly relevant for communities who face poorer health outcomes and health inequalities.
Despite Covid-19 and the current lockdown, we know that cancer hasn’t stopped. In fact, recent events have highlighted the health inequalities which exist and the impact on cancer screening and services. It is even more important that we keep talking about cancer and support all communities to become more aware and knowledgeable in their own health needs.
More funding available!
Action Hampshire have received funding from the Wessex Cancer Alliance to provide grants to individuals, groups and not for profit organisations. Grants can be used by groups in creative ways to engage with the people they’re supporting to get across key cancer messages. We know that cancer is more treatable the earlier it is diagnosed so we want people to understand how important it is to attend cancer screening and go to their Doctor is they notice something unusual for them. Early diagnosis saves lives.
Groups and individuals can apply for a grant of up to £5,000 (starting from January 2021). See the box below for links to the Application Form and accompanying Guidance Notes.
Communities Against Cancer is funded for prevention and awareness cancer projects. It is not for funding groups to support people living with cancer. Information and support for people affected by cancer in Hampshire, Dorset and the Isle of Wight can be found here on the Cancer Matters Wessex website.
Ways to get involved
Wessex Voices and Wessex Cancer Alliance recognises people affected by cancer are our partners in shaping local cancer services and support. How people want to get involved will vary so we want to offer different ways of doing this.
There are different ways to get involved depending on what you would like to do. People have shared their experiences in a variety of ways:
Our Patient, Carer and Public Involvement Network involves a diverse range of people from across Dorset, Hampshire and the Isle of Wight. Working together with the Wessex Cancer Alliance, members volunteer to get involved in plans to improve cancer services and support for our residents, ranging from how to keep people well; making sure more people get an early diagnosis of cancer to give them a chance of better outcomes; to improving people’s care and support through and beyond their treatment.
Anyone affected by cancer can join at any time, including patients, carers, family members and anyone else who is interested in participating. It’s for people from all parts of Dorset, Hampshire and the Isle of Wight and for people of all ages and experiences, especially those with diverse ethnic and cultural backgrounds.
If you would like to get involved, please complete this online form. We also have information about the Network and a joining form in Easy Read.
Or get in touch at: email@example.com or 07595 424198.
The Dorset Cancer Partnership is seeking new volunteers to help with Stage 2 testing of their new website, Cancer Matters Wessex, a new website that aims to provide more local and personalised information for cancer patients in Dorset and Hampshire and the Isle of Wight, including people who have had cancer in the past or are worried they may have cancer, and for family, friends and carers of patients living with cancer. The website is sponsored by the Wessex Cancer Alliance in collaboration with the Dorset Cancer Partnership and Macmillan Cancer Support.
The first phase launch of the website took place in July 2020. Second phase testing will focus on information about specific cancer pathways, including diagnosis, treatment and support available.
If you are interested and you are:
Then please complete the Expression of Interest form by 9am on Monday, 16 November to register your interest.
Please share this information with anyone you know of who meets the above criteria and may be interested in taking part. Thank you.
Have you been diagnosed with breast cancer (stage 1-3) within the past 24 months? Researchers at the University of Surrey would like to hear about your experiences.
Understanding factors that influence how people cope after a cancer diagnosis is important to better support those recently diagnosed. University of Surrey is exploring the different ways people think about their illness and how this may be associated with their psychological wellbeing.
We are looking for people to fill out a short questionnaire exploring thinking styles, wellbeing and health. Findings will help inform interventions to support for those recently diagnosed. You must be over 18 years of age and living in the UK to take part.
If you're interested in participating, please click on the following link to complete the survey: https://surreyfahs.eu.qualtrics.com/jfe/form/SV_e2tDvQrWtSx5xBj
If you would like more information, please email: firstname.lastname@example.org
gf you or a loved one has been affected by cancer, you could help improve cancer support in Southampton. Macmillan Cancer Support and the Wessex Cancer Alliance (WCA) are working together on a new project, the Right By You patient, carer and community advisory group.
Why your help is needed
People have told Macmillan and WCA that cancer care provided by GP practices and hospitals is not always joined up and people don’t always get the support on the things that matter to them.
“I have this team around me, supporting me…. sometimes the team don’t work very well together”
“It’s the little things, that are not the medical things in the community … it can feel as if we are left to our own devices”
This new project is about patients, carers, GP practices and the hospital in Southampton working together to make sure people affected by cancer get the support they need in a place of their choice. If you have experience, thoughts and ideas about how to make this better for people, your help is needed.
What the patient, carer and community advisory group will do
The group will help shape new services for people affected by cancer. They will make recommendations about how to ensure patients, carers and loved ones get clear information about cancer care and treatment and other the support where and when they need it.
The group will meet 6 times a year for 1 hour. Until people can meet face to face again, the group will meet online and support will be provided with accessing online meetings. Members will receive a financial contribution to the cost of joining virtual meetings. They will also be offered opportunities to get involved in other ways if they wish to.
I am interested, what do I do now?
Anyone affected by cancer can get involved and recruitment is ongoing all year round. If you would like to get involved or arrange an informal chat to find out more, please contact email@example.com or call on 07553 332932.
Below is also a copy of the official flyer, which you can share with anyone who may be interested.
The Cancer Services Partnership at NHS Hampshire Hospitals Foundation Trust (HHFT) are hosting a virtual session on 18 November 2020 focussing on how people can improve their mental heath and wellbeing during challenging times. This session is not just for cancer patients - family, friends and carers are also encouraged to join.
This is a half-day event starting at 9.15am and it will have four 30-minute sessions followed by time to ask questions afterwards.
If you are interested in joining, please email firstname.lastname@example.org and a copy of the agenda and Zoom joining information will be shared with you closer to the event date. A copy of the flyer can be found below.
If you’ve had a cancer diagnosis, the Macmillan Survivorship Research Group (MSRG) at the University of Southampton want to hear from you about your experiences.
Commissioned by the Wessex Cancer Alliance, the MSRG will be setting up a User Reference Group, who will support the evaluation of cancer services across Dorset, Hampshire and the Isle of Wight. The User Reference Group’s participating in the evaluation will help ensure personalised cancer services are responding to the needs and services of everyone diagnosed with cancer.
Participating in this group will involve:
One to two representatives from the group will also be a part of Advisory Group (which will also meet up to three times a year on Microsoft Teams or Zoom, starting 9 October 2020.) However, recognising the short notice period, input will be sought outside the meeting from members if attendance is not possible. Expenses incurred through attended these meetings will be paid.
Taking part in the URG will provide an opportunity to get involved in all stages of the evaluation, including:
If you are interested in this opportunity, or have any queries about the role, please contact the Evaluation Lead for the MSRG, David Wright at D.Wright@soton.ac.uk.
The National Diabetes Audit (NDA) looks at the effectiveness of healthcare against guidelines set out by the National Institute for Health and Care Excellence (NICE). To do this, the NDA collects and analyses data and reports shared with a range of stakeholders to improve the quality of services for people with diabetes.
The NDA are now recruiting volunteers for their advisory groups who will work with clinicians and researchers about the audit data, focussing on the elements of care that are important to people living with diabetes. Volunteers will represent the views on the care provided by health services.
To get involved, visit Diabetes UK's website for more information and application forms. The closing date for applications is Friday, 28 August 2020.
NHS North East Hampshire and Farnham Clinical Commissioning Group (CCG) wants to hear from local residents about their experiences of the Coronavirus pandemic to help improve services. There are two opportunities to get involved: participating in a virtual community forum and an online survey. More details below.
Virtual Community Forum
NHS North East Hampshire and Farnham Clinical Commissioning Group (CCG) would like to invite you to the next Community Forum, on 29th July 2020, between 2.30pm and 3.30pm. This will be a virtual event that will offer the opportunity to hear from us about the response to the pandemic, plans for the future, new ways of working and how feedback from local people is helping to shape the work of the CCG.
We understand that a virtual meeting does not allow for the same type of conversations that we would normally have face to face, so in order to get the most out of our time together we will be sharing more information and guidance a bit nearer the time on how you will be able to contribute during the event.
You can register for the event HERE and we encourage you to share this opportunity with your friends, family and colleagues.
Share your views and experiences
We also want to better understand the experiences that you and your family have had during the COVID-19 global pandemic. We have developed a survey with questions that focus not only on access to health and care services but also on how you have been coping and looking after yourself.
The views and experiences you provide us with will be used to shape your local health and care services, as well as influence the way we work with and support communities like yours, both during and after this crisis.
We are aware that many different organisations are asking for feedback at the moment but we would really appreciate your time and views at this critical moment for your local NHS health and care services.
This survey will take approximately 10 minutes to complete and we will be sharing the initial findings at the Community Forum. Please share with friends, family and contacts so that we can get a real picture of what has worked and what has been challenging for local people.
The survey can be accessed here: https://www.surveymonkey.co.uk/r/NEHFCCG. Please share this link with others who live in North East Hampshire or Farnham.
During the Covid-19 pandemic, people who work in health and care services and the voluntary and community sector across the South West have offered new choices to patients and the public, for example, by making more use of online and telephone appointments.
Our NHS colleagues across the South West, including Dorset, would like to know what you think about these new ways of working to help them understand how they can best meet the future needs of the people living in our region.
Please share your views by clicking on the link below. The survey should take between 10-15 minutes:
The information you provide will be used by health and care organisations and commissioners at NHS England and NHS Improvement in the South West to help them understand what suits different people best in different parts of our region.
The survey will be open until 31 July, 2020. A report with the results of the survey will be published on the NHS England and NHS Improvement South West website and participating health and care organisations and shared with those who provide their email addresses.
The Dorset Cancer Partnership is seeking members of the public living in Dorset, Hampshire or the Isle of Wight to take part in user testing of their new website, Cancer Matters Wessex. Your feedback will help the development of the website before it is launched later this year.
What is Cancer Matters Wessex?
Cancer Matters Wessex is a new website that aims to provide more local and personalised information for cancer patients in Dorset and Hampshire and the Isle of Wight, including people who have had cancer in the past or are worried they may have cancer, and for family, friends and carers of patients living with cancer. The website is sponsored by the Wessex Cancer Alliance in collaboration with the Dorset Cancer Partnership and Macmillan Cancer Support.
The first phase launch of the website will focus on information about COVID-19 for cancer patients and how it will impact on their lives. The second phase launch will focus on information about specific cancer pathways, including diagnosis, treatment and support available.
How can I get involved?
If you’d like to participate in the user testing of the website, you will need access to an email account and a computer. Contact Ruth Webster (email@example.com) by 10 July for further information.
The Thames Valley and Wessex Strategic Clinical Network are hosting an Early Intervention in Psychosis (EIP) Workshop on 18th March 2020 from 9.30am to 4.00pm at Crowne Plaza, Basingstoke.
The event provides an opportunity to network with colleagues from across the region, hear from National and Regional leads, to share local initiatives and consider how we can work together to improve care across Thames Valley and Wessex.
Topics will include national programme overview, regional EIP data, implementing peer support, clinical best practice from across the region and local best practice examples.
This workshop is targeted at a variety of professionals including Clinical Directors, Chief Operating Officers, Commissioners, Clinicians working in EIP, Peer support workers, Pharmacists, Data leads and anyone else with an interest.
Register for your place today by clicking here.
For any queries or help with registering please contact: Carolyn.Hinton@nhs.net or to view the event flyer, click here.
NHS England is seeking patient engagement and input into the Length of Stay (LOS) Programme.
We are planning to hold an engagement event with key leaders and interested parties to outline the LOS programme on 20 January at 10am to 1pm (registration opens at 9.30am). Lunch will be included. The venue is still to be confirmed but will be in Leeds city centre.
We would also like to invite a key patient network leader to take part on the LOS Oversight Group meeting to maintain a focus on inclusion of the patient voice across the programme. Attendance would be on a quarterly basis.
The LOS programme advocates that patients are discharged (either home or to a care facility) rather than remaining in hospital when clinically appropriate and without unnecessary delay. Unnecessarily prolonged stays in hospital can significantly decondition patients, increase the risk of falls and expose patients to infections.
Regular eye tests, or sight tests, are the best way to ensure your eyes are healthy and make the best use of your eyesight. Adults with learning disabilities and/or autism are 10 times more likely to have a serious sight problem (SeeAbility, 2016.) Eye tests can monitor any changes in how well your eyes can see, confirm if you need glasses and/or contact lenses, and monitor diseases.
Wessex Voices is working with NHS England Wessex (South) and SeeAbility to understand how eye care and eye tests can be improved for people with learning disabilities and/or autism in Dorset, Hampshire and the Isle of Wight.
What is the survey about?
In our new survey, we want to know what are the problems and how can accessibility be improved? Questions in the survey will ask about the experiences of:
We want to hear from adults with learning disabilities and/or autism, people with complex needs, and their carers/supporters.
The survey will be available online (including Easy Read) and hard copies with reply paid envelopes (including Easy Read). We are also doing face to face interviews with individuals, as well as speaking at group forums and meetings. Get in touch with us if you would like Easy Read versions, hard copies or would like us to speak with your group or for an individual interview.
When is the survey open?
The survey is now closed; it was open from 20 December 2019 to 16 February 2020.
When is the report available?
The report will be published in 2020 on our website. Please keep checking our websites for updates or if you'd like to receive a copy when it is available, you can sign up by emailing firstname.lastname@example.org.
Where can I get more information about eye care and tests?
If you have any questions or would like to get involved, please emali us at email@example.com.