By 2020 it is estimated that nearly 4 million people in the UK will be living with and beyond cancer. Rising cancer incidence rates and advancements in the way we can treat cancer mean there will be an increased pressure on our services in the coming years, resulting in the need for new ways of working and re shaped services. Velindre Cancer Centre are currently implementing a person-centred care pathway, in partnership with Macmillan, to ensure that all patients and their families have access to all of the components of the Macmillan Recovery Package, which improves outcomes and enhanced patient experience. The Recovery Package aligns to the Welsh Government's prudent healthcare values and enables patients to take control of their condition as a result of the implementation of new tools and resources, designed to support self-management. The components of the Recovery Package include;

Holistic Needs Assessment and Care Planning

Treatment Summary Cancer Care Review Health and Wellbeing event.

As part of the implementation of person-centred care pathway at Velindre Cancer Centre, patients‟ views were sought regarding access to information and its role in supporting self-care. Our patients told us that they felt overburdened by the amount of information that they received at times, that accessing reputable and trusted information online was challenging and that there was low awareness of the important information service managed by the cancer centre. The portal was designed to support patients in accessing information and in the self-management of their concerns and needs. The portal brings together tools and resources that can be accessed from home or on the go, relating to patients' holistic needs, including the top tips documents and information on support groups that operate both at the cancer centre and in the local community.

Person Centred Care at Velindre Cancer Centre

Introduction Welcome to the Summer Edition of our Newsletter

Summer Edition 2015

South Wales Cancer Network

Newsletter

Special points of interest:

Person Centred Care Pathway at Velindre Cancer Centre

Jane‟s Corner

IPads to help communication

Bowel Cancer—mobile drop in Clinic

Swansea Craft Group

Tenovus Write with us Groups

Inside this issue:

Patient Centred Care Path-way at Velindre Cancer Centre

1

Jane‟s Corner: Carers need care too

3

IPads help patients with cancer to communicate

4

Swansea Craft Group 5

Mobile Bowel Cancer Unit in Cwm Taf

6

Tenovus—Write with us Groups

7

CONT’D

The portal empowers patients to access information that can be used to self-manage their condition, whilst detailing further advice on where to seek further sources of support when needed. Given that different patients will have different levels of need, the portal offers advice on self-care through to discussing options for referral to group programmes or a professional. Topics covered include managing fatigue, emotional distress and accessing welfare benefits support. Patient engagement has been crucial in the development of the portal and in the wider implementation of the person-centred care pathway. Focus groups have been held with several patient groups and have been invaluable given that patients are the ones who experience the service first hand and they offer a unique, highly relevant perspective. Patient feedback has opened up real opportunities for improvement, not considered before, like the portal that will improve the accessibility to self-care information for people living with and beyond cancer. Patients reported that the portal was „easy to navigate‟ and that the design ensured that „trusted and

relevant information could be found quickly‟. In addition, patients have contributed several ideas towards other topics and information that would be useful to access via the portal including tumour specific information and information to support carers. The portal also supports clinicians in the delivery of the holistic needs assessment and care planning process by providing a central resource hub for providing information and signposting to supporting services. Feedback from both GPs and patients has highlighted that conversations around cancer are often difficult to have in primary care, and as a result

the portal has been made accessible to GPs across Wales and can be used to support patients who would like to access care in their local community, often closer to home. Having now gone live, the portal will receive further evaluation and ongoing development, where both patient and clinician feedback will continue to be sought and monitored. It is hoped that the resource can be shared with other local health boards to provide easier access for patients across Wales to self-care and self-management information. The implementation of the person-centred care pathway to date has already identified numerous way that local health boards can work together to ensure equity in the services provided and to improve the overall patient experience across Wales. The Velindre Information Portal can be accessed from the Velindre Cancer Centre website, or internally via the Velindre Cancer intranet. For more information, please contact Benji Williams, Macmillan Person Centred Care Manager at Velindre Cancer Centre – Benjamin.williams3@wales.nhs.uk

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Carers need care too

Feeling ill is always unpleasant. Not being sure when or if you are going to get well is stressful. Because we feel bad, sometimes we make life difficult for our friends and family who we see the most. The people that do the most for us, because they love us. We can hurt and distance the people that we care about and care for us, causing rifts in the relationships , causing hurt to people who don‟t deserve it.

We can snap at people, and say unhelpful things. Usually because we don‟t understand why we feel upset, or even that we do feel upset.

Here are some basic questions to ask ourselves about why we feel down, or snappy, or just not inclined to talk.

1. Is s/he REALLY the reason that I am feeling bad?

2. Am I having a bad day?

3. Am I afraid?

For most of us, I believe that the answers are going to be mainly „bad day‟ and „afraid‟ combined. Pain, nausea and fatigue are common in cancer and in cancer treatment. For those of us over, say, 60, pain and fatigue are common anyway. I am sure that I don‟t have to explain about the fear. So now that we are aware of why we are being antisocial, what can we do?

Sometimes, nothing, But we can try force a „thinking gap‟ of a few seconds between a well meaning friend saying, for instance “How can I help?” or ' how do you feel ' and a snappy reply like ' how do you think I feel? ' . If you were saying “How can I help?” what would you like to hear back? Any number of positive replies, I am sure, and a thank you. Something like, “ Thanks for caring, but I‟m just not myself today”

It is a lot easier to be polite to people we don‟t know well than our family and friends, but we can make their lives and ours easier by telling them that we appreciate their presence, and their help.

It can help to tell people that some days you the illness makes you cranky. On a good day tell them you love and appreciate them, but also warn them at the same time that on a bad day you may say things that are the illness speaking, and to please bear with you on the bad days. If you have addressed this early on they are more prepared to be understanding on the bad days, snappy remarks will be more understood and not dwelt on , and hopefully forgotten.

BUT-This is not a get out of jail free card, you cannot fall back on your illness as an excuse for being mean all the time, you also have to be aware of yourself, what did you say that could have upset someone? , and the other thing to remember is that everyone else can also have bad days.

Care for your carers, they deserve it. Jane Barnard

Jane’s Corner

Cancer Awareness Dates 2015

January

Cervical Cancer

February

World Cancer Day

March

Prostate Cancer

Ovarian Cancer

Brain cancer

April

Bowel Cancer

Orchid Male Cancer awareness

June

Carers week.

Myeloma week

July

Mesothelioma Day

September

Thyroid Cancer week

Lymphatic Cancer week

October

Breast Cancer

November

Mouth Cancer

Lung Cancer

NET Cancers

December

Childhood Cancer Awareness Week

Patients at Cwm Taf University Health Board who have undergone treatment for cancer which has left them unable to speak, have been loaned iPads to help them communicate. The iPads purchased with monies donated by members of the public is a huge asset in the recovery of patients.

Fifty seven year old Tom Smith has recently undergone treatment for oral cancer - a glosso-laryngectomy - which means he is left permanently unable to speak.

Tom who lives with his wife Anne in Pontypool was diagnosed with oral cancer in April 2014 and shortly after diagnosis, started treatment. Tom says: “Being in hospital for a few months I was encouraged to try the iPads that they loan out to patients with the pre-installed apps to help them communicate. This works by typing what you want to say and the app speaks your words.”

Realising that this was something that he could find beneficial Tom purchased his own iPads. Tom says: “I never used an iPad before my operation but it‟s a good idea to have choices to communicate as pen and paper are fine but some people can‟t read my writing.” Tom jokes.

“Ideally I would have recorded my own voice as the pre-installed voice doesn‟t sound anything like mine, but there was a problem recording it. So, I have had my brother Eric‟s voice recorded. This way I haven‟t completely lost my identity. Tom was brought up in Ayrshire in Scotland so the accent is quite different to the one that comes with the standard app.

“I‟m just a one finger user at the moment but I‟m keen to get familiar with it so that hopefully I can use it more efficiently at work.” Tom has worked for Zenith Media in Pontypool for three and a half years and is eager to get back to work.

Jane Wall, Macmillan Cancer Head and Neck Specialist Nurse said: “We are delighted to have purchased three iPads which will help some of our patients who have undergone throat surgery to communicate. There are apps available which we have pre-installed onto the iPads making them easily accessible. It's difficult enough coming to terms with any illness without the added frustration of not being able to communicate; the iPads will be a great asset to the department and a great aid to the recovery of our patients.”

For further information regarding this article please contact Sharon Draper, communications officer 01443 744927 sharon.draper@wales.nhs.uk

iPads help patients with cancer to communicate

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This newsletter has been produced by the South Wales Can-cer Network. If you wish to place an article in the newsletter

please contact Eleri via e-mail on:

Eleri.girt@wales.nhs.uk

Cwm Taf University Health Board together with Tenovus Cancer Care are running a 12 month „bowel bus‟ pilot project to raise awareness of bowel cancer.

The mobile unit has so far spent three days in Merthyr Tydfil and one day in Porth. Thirty two people have so far visited the bus and staff have spoken with a further 181 people in the community about their concerns around cancer. The bowel cancer unit provides a rapid one-stop bowel clinic to members of the public who have concerns or symptoms of bowel cancer. Every person visiting the mobile unit is offered a consultation with a senior clinical nurse specialist from Cwm Taf University Health Board in addition to Tenovus Cancer Care support services, including calls back to people with cancer, benefits and welfare rights advice - as well as free counselling to provide emotional support.

The unit can offer examinations which are carried out in a discreet and comfortable environment and access to further tests that may be required. Follow-up clinics are also being run from the unit to allow the patient to be seen by the same nurse.

According to the latest figures from the Welsh Cancer Intelligence and Surveillance Unit, bowel cancer is now the most common cancer in Wales. Lifestyle behaviours and deprivation also are linked to bowel cancer.

Early detection of bowel cancer is crucial as treatment can be started earlier and prognosis improved. Symptoms vary from person to person but if you have any change in bowel habits, blood in stools, abdominal pain, discomfort or bloating you should see your GP.

To find out where the unit will be over the 12 month period visit http://www.tenovuscancercare.org.uk/how-we-can-help-you/mobile-cancer-support/drop-in-bowel-clinic/

Bowel Cancer Unit proves a success to the community of Cwm Taf

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WE ARE ON THE WEB:

WWW.http://www.cancernetwork.wales.nhs.uk

The Patients Voice at the Heart of the HospitalThe Patients Voice at the Heart of the Hospital Who are we?

A mixture of Velindre Cancer Centre patients, carers, management and staff who work together to improve the lives of patients and carers.

What do we do?

Patient Information Bags – over 11,000 produced since Jan ’04.

Provide the patients view on a wide variety of subjects from Transport to Catering to Dignity.

Help out at Radiotherapy Open Evenings.

Help with annual audits at the Hospital.

Discuss all your comments, suggestions and opinions.

For Further Details Email: plg@wales.nhs.uk

or ring Helen Davies on 029 20 316278