news Yorkshire Cancer Patient Forum News Welcome to this edition of the Yorkshire Cancer Patient Forum News. Newsletters are produced quarterly. If you have any ideas for articles or you have a feature you would like to submit, please contact [email protected]Remember too, that you can follow us on Facebook and Twitter Also don’t forget our website www.yorkshirecancerpatientforum.co.uk Picture of Chief Constable of West Yorkshire Police Dee Collins with Breast of Friends Wakefield – Full Story on page 16 Yorkshire Cancer Patient Forum News Autumn 2018
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Yorkshire Cancer Patient Forum News
Welcome to this edition of the Yorkshire Cancer Patient Forum News. Newsletters are produced quarterly. If you have any ideas for articles or you have a feature you would like to submit, please contact [email protected]
Remember too, that you can follow us on Facebook and Twitter Also don’t forget our website www.yorkshirecancerpatientforum.co.uk
Picture of Chief Constable of West Yorkshire Police Dee Collins with Breast of Friends Wakefield – Full Story on page 16
New chair for the Forum Many of you will be aware that the Forum Chair Phil Kelly was planning to step down at our 2018 AGM to allow him more time to devote to other interests. We have been very fortunate to have had Phil at the driving seat for the last three years. He has ensured that the Forum has received funding and has grown in number, and that patients have been kept at the forefront of planning cancer services. Phil will continue to be involved on the steering group so we will not lose his experience and knowledge. We are delighted to introduce our new Chair Kursh Siddique, who was featured in our February 2018 newsletter. Kursh is director of the not for profit organisation BAME Voices UK Limited. He cared for both of his parents who sadly died of cancer. Pictured are Kursh (left) and Phil at the Forum AGM, which was held at St George’s Conference Centre, Leeds.
Linda Sanderson CLIC Sargent Nurse Educator Today 11 children and young people will be told they have cancer. CLIC Sargent is the UK’s leading cancer charity for children and young people and their families. I met with Linda Sanderson, CLIC Sargent Nurse Educator, who is based in Leeds to discover more about her pioneering role. When she came into post in March 2017, it was a new role, which has since been replicated in Birmingham and Bristol. Linda, who spends one day a week on the Children’s Oncology Unit in Leeds, to maintain her clinical practice, covers the children’s hospitals in Leeds, Sheffield, Newcastle and Manchester. When a child or young person is diagnosed with cancer they will be treated in the most appropriate specialist cancer centre to suit their age, but this could be many miles from home. When they are well enough to go home, they will be cared for by local nursing teams and hospitals. Linda’s role is to support non specialist professionals to look after children with cancer, as near to home as possible.
Fortunately, most nursing teams don’t often look after children with cancer, so they need education and support to feel confident about this care. CLIC Sargent offers support to children and young people aged from 0-25 and works closely with other charities such as the Teenage Cancer Trust. From diagnosis, CLIC Sargent’s expert care teams will step in, ready to help, support and guide. They provide a package of support tailored to each young cancer patient and their family. For more information visit www.clicsargent.org.uk
What's going on near you? Find out about support groups, where to get information, and how to get involved with Macmillan where you live.
Go to www.macmillan.org.uk and search ‘In Your Area’
Who was Maggie? When landscape architect Maggie Keswick Jencks was diagnosed with cancer, there was nowhere private and comfortable for the consultant to break the difficult news. Maggie remarked to her husband that sitting on a plastic chair in a busy oncology department wasn’t the right place for such a difficult discussion to take place. Instead of simply forgetting about the experience, Maggie went away determined to make a change for the better. She gifted a stable block, which had been left in trust to her, to start a new charity – Maggie’s – a supportive centre based in the grounds of an NHS hospital, for anyone affected by cancer. Sadly Maggie didn’t live to see the completion of the Centre, but now there are a further 20 centres opened in Maggie’s memory. Their logo is ‘everyone’s home of cancer care’ for anyone with a diagnosis, their families and friends. They offer free practical and emotional support and have a range of professionals on hand including cancer specialists, benefits advisers, nutritionists, therapist and psychologists. Maggie said: “Above all, what matters is not to lose the joy of living in the fear of dying.”
Help provided by a Maggie’s Maggie’s brought in £26.7 million in benefits for
cancer patients
60,000 people visited Maggie’s for the first time in 2017 – professionals can refer but anyone can self refer
They can host cancer support groups
They usually open Monday to Friday daytimes, but can develop to meet local need
Maggie’s in Yorkshire By late Spring 2019, the first Maggie’s will open in Yorkshire. A site next to the multi storey car park near
to the Bexley Wing, St James Hospital, Leeds, is currently being developed. Laura Riach, centre fundraising manager for the new build came along to tell Panpals Yorkshire pancreatic support group, about the development. She said each Maggie’s is different, and each has had their own architect. What they have in common, is
that each centre is beautiful, and has a kitchen at the centre of the building. The kitchen is the hub of the building, with a large and welcoming kitchen table, where anyone affected by cancer can go and chat over a cuppa and homemade cakes. The Leeds building is on one of the most challenging sites to date, being bordered
by a car park and the ambulance pathway. The architect is Thomas Heatherwick, who was also responsible for the Olympic Cauldron. The building will have a rooftop garden, and Laura hopes there will be patients and their families who volunteer to help keep the gardens looking beautiful. So far, £5.7 million has been raised of the £6 million needed. Laura said there will be a campaign of fundraising activities to help to raise the remainder and they will be working with the Yorkshire Evening Post as a partner. For more information visit www.maggiescentres.org
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The importance of a healthy diet Dietitian Rebecca Little from Bradford Royal Infirmary talked to lung cancer patients about the importance of a healthy diet. The presentation was part of an Information Day organised by the Roy Castle Lung Cancer Foundation, hosted by Cancer Support Yorkshire, Bradford, this summer. Roy Castle Lung Cancer Foundation is the only UK charity focused on defeating lung cancer – the UK’s biggest cancer killer – in both men and women. Nutrition is needed to sustain the basic functions of life. It provides for growth, repairs, healing and movement. If you have a problem with your lungs, you use a lot of energy just to breathe. This uses lots of calories which can lead to weight loss and malnutrition.
Myths and fad diets First Rebecca dispelled some myths about fad diets. Many turn to Google for advice – and she said there were more than 12 million results for the term ‘diet and cancer’. She said there is no diet that will cure cancer. Patients should be wary about diets that seek to eliminate whole food groups, as they need to ensure they are not missing out on vital nutrients. Foods to avoid –when a patient undergoes chemo or if their blood cell count has dropped – a patient is more prone to infection. Rebecca advised that food hygiene was particularly important. Wash hands and
cook food thoroughly. Otherwise there was nothing in particular to avoid. If you are told by your team that your blood count is extremely low and you need to take extra caution they will provide you with advice.
Coping with symptoms and side effects Coughing and shortness of breath can result in
tiredness – use ready meals. Make it easy, and get people to help prepare meals and to prompt you not to miss meals
Taste changes can happen, particularly after chemo. If you have a metallic taste you could avoid using metal cutlery, consider using plastic versions. You might find tinned food makes this worse
If something doesn’t taste right, stay away from it for a while and try something else
Drink sharp drinks such as a bitter lemon, suck mints, clean your teeth regularly
Smoking can affect your taste so stopping can help
Add extra flavour with herbs and spices and try new foods
Nausea – try any form of ginger – such as tea, biscuits or ginger ale
Try cold foods such as sandwiches or quiche, cake, trifles and biscuits
Try dry foods such as crisps, crackers or toast
Speak to your GP or clinical nurse specialist about anti sickness medication
Poor appetite – eat little and often, you don’t have to stick to traditional meal times, if you fancy ice cream for breakfast or cornflakes for lunch that’s ok!
Weight loss – healthy eating goes out of the window. Choose full fat food and add cream, butter or cheese to fortify your meals
If you worry you are not getting a balanced diet take a general A-Z multi vitamin, ask your pharmacist for advice on which one to get
Tips for carers You want to feed your loved ones and worry when they are not eating. However, bear with them and be sensitive to their needs. Offer food regularly, but if they don’t eat it, take it away and avoid judgement.
Don’t watch cooking programmes with them when they are feeling nauseous!
If you’re going to hospital for treatment – take snacks as you can miss meals easily
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Don’t ask them what they would like for their next meal – they may not wish to think about food
A small alcoholic drink can stimulate appetite – check with your medical team that it is ok to drink alcohol
Ensure the kitchen is well ventilated so the patient isn’t exposed to cooking smells
Prescription nutritional supplements have their place and if you are struggling you might be prescribed them – but it’s nicer to get back to a normal diet when possible
Get out into the fresh air when possible as this stimulates the appetite
You can buy powdered milkshakes from the chemist or supermarket such as Complan or Meritine (previously called Build Up) make them up with whole milk to increase the nutritional content. Soup varieties are also available, again make up with hot whole milk
If you are struggling with your diet or losing weight, you should consult your GP or Clinical Nurse Specialist, and ask to see a dietitian.
From Skin Cancer to Skin Care – Gillian’s life changing experience A close encounter with skin cancer led former model and beautician Gillian Robson to develop a product to help others protect themselves in the sun. Gillian, who ran a hair and beauty salon in Easingwold, York, for 25 years, found her world turned upside down when she discovered a mole on her leg has changed. Within days she was undergoing surgery for skin cancer and has had several moles removed since. She was advised to wear high protection sun cream SPF 50, 5 star UVA even in winter. As she liked to have a tan, she used fake tan. Rather than having to apply lots of different products, she searched worldwide for a product that would combine the skin protection along with a natural healthy tan. When it became apparent there was nothing on the market, she teamed up with her friend, Katy Foxcroft who had 25 years of experience in business and product development, sales and marketing. Working with the UK’s leading sun care specialists Dr Jack Ferguson and Jo Warren, the team developed a
new product, Tancream – combining a high factor sun cream with a self tan. Gillian said: “Years ago, like so many others I wasn’t aware of the dangers of sun or sunbeds. I didn’t protect my skin properly from sun damage and when I put fake tan on, I thought my skin was protected from the sun’s harmful rays. Having skin cancer has made me determined to develop a product to protect everybodys skin and to educate people, especially the younger generation, about the importance of sun protection from an early age and how it can save lives.” Gillian and Katy work with various UK cancer charities to raise awareness including; York Against Cancer, MelanomaMe, and Look Good, Feel Better.
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Angie Gash – Patient Poet Angie Gash is a glass half full sort of person. Just over one year since she was treated for oesophagus cancer, she says she is making the most of her life and enjoying every minute. Angie, who lives near Halifax, is now a regular attender at the Upper Gastro Intestinal support group, held at Cancer Support Yorkshire, Bradford, each month. One of the highlights of the meeting is Angie reading a light hearted poem – although she adds she can write serious ones as well. She takes inspiration from all around her, and going through a cancer journey has provided her with more material. Printed to the right we have Angie’s poem on the Big C:
Patient poet Angie Gash
Big C I’ve heard a lot about Big C And never thought it applied to me But now it’s knocking on my door I must pick myself up off the floor So I’m going to treat it all with humour Take the mick right out of this bloody tumour I haven’t time to pop my clog I’ve to write my poems and walk the dog I’ve always had a healthy life Easy going, no medical strife Though not quite sure about the date I’ve not seen the doc since 2008 I haven’t got a medical mind And want to leave that all behind The MRI and the CT scan I’d like to chuck them down the pan The blood tests and the urine sample Just another dire example The tube up the nose, the throat endoscopy And then the dreaded laparoscopy And I really want to throw in the towel When they ask me if I’ve opened my bowel It’s all too much, my head will pop If all this hospital stuff don’t stop! And I don’t want to speak all this medical chat The technical terms of this and that Much better out shopping and buying a bargain Than becoming an expert on medical jargon Now it’s nearly time for my operation And for that they’ll need my cooperation So I’d stop all this grumbling if I could For everything done is for my own good And after all when said and done I’m certainly not the only one There’s people much worse off than me So I’ll just keep smiling and let it be ‘Cos through it all I’m in good hands I’m not done yet and I’m making plans With my medical team right by my side I’ll wear my survivors badge yet…...with pride!
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Bone Cancer Research Trust
The eye catching orange t-shirts and hoodies of the Bone Cancer Research Trust team have become a familiar sight in bustling Horsforth High Street, near Leeds. When I visited the staff team were all hard at work but happy to pose for a colourful photo with their mascot Bridget Bones. The Bone Cancer Research Trust (BCRT) is the leading charity dedicated to fighting primary bone cancer. On average 12 people every week are diagnosed across the UK and Ireland. The charity’s mission is to save lives and improve outcomes for people affected by primary bone cancer through research, information, awareness and support. Their ambition is for a future where primary bone cancer is cured. For those affected by the disease right now, their high quality information and supportive network means no one should have to feel alone or isolated. The charity was founded by Professor Ian Lewis, a paediatric oncologist at St James’s University Hospital, Leeds. He was treating children with primary bone
cancer at a time when there was little information and research about the disease. He felt it could be worthwhile to bring patients and their families together to focus their efforts on
fundraising for better research. BCRT was formed in 2004 and registered as a charity in 2006. Professor Lewis has only recently stepped down as a charity trustee and many of the original founding members are still involved. In the early days the organisation operated from a room at St James’s University Hospital, Leeds. Now there are 13 members of staff, including a senior leadership team of three which includes Zoe Davison as Head of Research and Information; Mat Cottle as Head of Fundraising and Communications, and Liz Eatock who heads up Finance. Research: the charity has spent £3.2 million directly on research. They fund a number of
grant programmes including funding PhD students, early career fellowships, infrastructure grants to allow surgical centres to facilitate sample collection and Explorer grants to enable researchers to undertake a substantial project.
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Although there have been significant advances in the understanding and treatments of more common cancers, because of a lack of research there have been no significant improvements to bone cancer survival rates for nearly 30 years. Information: they are the trusted source of information for people who are affected by primary bone cancer. Their website and leaflets are clear, reliable and up-to-date. One striking example is their step-by-step guide designed to be not only a source of information, but a place to keep notes. The guide was developed by a voluntary information advisory panel which included healthcare professionals, patients and their families. Awareness: the charity work closely with GPs to help them to identify and diagnose primary bone cancer. As a rare cancer, a GP may only come across one incidence in their career.
Support: they provide a supportive network for patients and families providing peer support, sharing stories
that inspire hope, signposting people to specialist support and offering an annual conference for patients and healthcare professionals. The charity receive no government funding so rely entirely on the support of the general public to continue their life saving work. If you would like to know more about their work, offer to volunteer at events or fundraise they would love to hear from you. www.bcrt.org.uk Tel: 0113 258 5934 Or find them on Facebook or Twitter
Giving Back
Families often want to raise money for Macmillan Cancer Support to thank them for their care of loved ones. Organising an event for the first time can be daunting, so help is at hand from Macmillan Fundraising Managers based all across the UK. In our region, I met up with Fundraising Managers Stacey Rhodes and Adele Hopkins. Stacey covers the Wakefield and Kirklees area, while Adele covers Bradford, Calderdale, Airedale and Craven. This enthusiastic duo are passionate about supporting families and working alongside volunteers to raise money for the charity.
Adele used to be a Macmillan volunteer, so knows first hand the importance of looking after volunteers. She and Stacey often work on events together and clearly love their roles. Said Stacey: “It’s wonderful to support people to make a difference and to give back.” If you would like to know more about fundraising or volunteering for Macmillan see www.macmillan.org.uk
The June Hancock Mesothelioma Research Fund is a UK registered independent charity. Since it was set up in 1997, their supporters have raised well over £1.5 million. The Fund is run by six volunteers and therefore there are no staff costs or overheads. Mesothelioma is a cancer that most commonly starts in the layers of tissues that cover each lung. More rarely it starts in the layer of tissues in the abdomen that surrounds the digestive system organs. It is almost invariably caused by exposure to asbestos fibres and in the majority of cases the exposure occurs in the workplace. The June Hancock Research Fund have supported the campaign for delivery of the Mesothelioma Charter and for a worldwide ban on asbestos, exposure to which is the only known cause of mesothelioma. During the 1960s asbestos was a very popular industrial material. Not only is asbestos a flexible and strong material but it is also fireproof and so was considered an extremely useful building tool, even though the dangers of exposure to asbestos have been known since 1899. JW Roberts, a Leeds based asbestos manufacturer let asbestos escape from the factory into the surrounding residential area. The asbestos dust covered the local streets and nearby school, exposing many residents to the dangerous mineral. One such resident was June Hancock, who grew up and went to school in the area. June was diagnosed with mesothelioma in 1994 and decided to take action against Turner & Newall (T&N PLC), the parent company of JW Roberts. June decided to fight for justice and so instructed a legal team to take the company responsible for her illness to Court. This was the first case
brought by a mesothelioma sufferer who had not worked with asbestos. June secured a landmark victory in 1995, paving the way for others to seek justice and to do all this whilst suffering from this painful and debilitating disease tells you something about her determination and strength. June sadly died on July 19th 1997. This is not the end of the story. June’s resolve to see justice prevail helped to raise public awareness of the asbestos contamination in this country. She touched the hearts of everyone who came to know her during her illness, and this led to the setting up of the ‘June Hancock Mesothelioma Research Fund’. Pictured from left are Trustee and Research Manager Dr Kate Hill, who is also member of the YCP Forum and Chair of Trustees Kimberley Stubbs, who is daughter of the founder June Hancock. They are seen at the annual Meet the Researchers event held on Action for Mesothelioma Day, which this year was held at the Crowne Plaza Hotel, Leeds. For more details see www.junehancockfund.org
Hull and East Riding (HER) Breast Friends launch new premises Congratulations to Hull and East Riding (HER) Breast Friends who have moved to a fabulous new home at The Octagon, Walker Street, Hull. They held an official launch with friends, supporters and referrers invited to view the modern and airy premises which are close to the city centre and on a bus route.
Each Trustee oversees one aspect of the charity and at the launch they hosted tours around the premises explaining all the different services on offer including a Wig Bank, a Bra Bank, a Breast Awareness campaign team, beauty and complementary therapies and an annual Pink Pamper Day for local people who have been diagnosed with breast cancer. Vice Chair, Pam Trays (left) and Charity Manager, Jayne Beck are pictured at the new office which will be named after Jan Jones, their founder who sadly recently passed away. Contact HER Breast Friends on 01482 221368 or email [email protected] www.herbreastfriends.org.uk
Free Will review for charity
Jane Hibbert, from the Roy Castle Lung Cancer Foundation, came along to a Bradford information day run by the charity, to raise awareness about the need to have an up to date will. Jane, who is Head of Private Fundraising, said every adult should have a will, and yet only 50% of adults have them. Common myths she has heard include: “I don’t need a will. My family will make sure my wishes are carried out” and “I did a will years ago”. Research shows that 1:4 wills are defective or of poor quality. If your circumstances have changed, such as a marriage, your will is null and void. Roy Castle Lung Cancer Foundation have partnered with a national firm of solicitors who will review your will for free. If you need a new will, that is free of charge as well. If you consider making a donation, all the money goes to the charity. Patients may also consider using the same company to prepare your Lasting Power of Attorney at half price. This is the legal document which appoints someone to act for you if you become unable to make decisions or manage your affairs. For more information see www.roycastle.org/Wills or call Jane on 0333 323 7200 ext 9127.
Understanding the Cancer Care and Treatment needs of people with Cancer and Memory Problems “Hi, we’re Rachael and Alys, researchers from Leeds Beckett University. We are doing a research study to try and understand the cancer care and treatment experiences of people with
memory problems, to see if we can help to improve these. We are looking for people to interview who have experience of cancer and memory
problems, either from having both of these conditions themselves, or from supporting a relative or friend with both of these conditions. If you are interested in hearing more about the study
or would like to take part, please contact us using the following details: [email protected] 0113 812 9238 or 0113 812 5909
Thank you very much for your help! Rachael and Alys”
All aboard for information and advice
Macmillan Cancer Support bring information and advice about life with or beyond cancer, to you in your local community. Everyone is welcome to use the service. Whether you have a cancer diagnosis, have a friend or relative affected by cancer, or are worried about cancer in any way at all, there are lots of ways that Macmillan can support you – medically, financially, emotionally and practically. A dedicated mobile team of highly qualified Macmillan professionals travel across the UK on a fleet of six green Macmillan buses. In the North of England, our bus is called Beryl, and she can be found at venues throughout the region including local shows, shopping centres and supermarkets. I caught up with Hazel Greaves, Macmillan Cancer Information and Support Specialist, when the team visited Briggate, Leeds this August.
Hazel is a radiographer, and the team all have medical or social care backgrounds. Local Macmillan professionals and volunteers usually join the bus when it is in their region. On an average day, the team will have 15-30 in depth
conversations on the bus, and handout anywhere between 100 – 700 Macmillan ‘Signs and Symptoms of Cancer’ leaflets. On the afternoon I visited, the most common requests were from ladies asking about breast screening once they have turned 70, travel insurance advice and worries about suspicious lumps. It was heart warming to see how many passers by simply came up to say “Hello” or to donate something in memory of loved ones. To find out more about the Mobile Information and Support Service see www.macmillan.org.uk or call free on 0808 808 00 00
Knitted Knockers UK There is a small army of knitters across the UK carefully crafting prostheses for women who have undergone mastectomy or lumpectomy.
They are members of the UK registered charity Knitted Knockers UK (KKUK) and give their time voluntarily to knit or crochet, free of charge, each knocker to fulfil a personalised request. The charity was set up in 2014 and has been a registered charity since 2015. It relies on donations and the generosity of the volunteer members to operate.
Women who have undergone surgery are provided with a silicone prosthesis by the NHS which some ladies find uncomfortable, heavy and it may rub against scars left after surgery causing rashes and pain.
At KKUK they want women to know that there is a lightweight 100% cotton alternative which takes the form of a real breast and is soft against the skin, breathable, washable and easy to adjust to make a perfect fit if necessary.
Aqua Knockers are also available to give women the confidence to swim or exercise again. They are made in a soft acrylic yarn with a filling which does not absorb water and stay in place in swimwear.
The charity has more than 100 authorised knitters who are based all over the UK and Ireland. They are known as “Knockerettes”. Some volunteers join the group as supporters to help to spread the word about the charity.
Tina (pictured) from Baildon, heard about the charity from a friend and became a volunteer because her Mum has had breast cancer. She became a Knockerette in March 2016 and is also a member of the promotions team.
Regular events are organised in Leeds City Centre M&S and John Lewis stores to spread the word about Knitted Knockers which are always made free of charge, even for repeat orders.
On the third Wednesday of each month Tina has a display of the full range of Knockers in the Lingerie department of M&S Leeds City Centre store. Ladies can try them in the fitting room there. She also coordinates a Knit, Natter and Promotional event in the Community Hub at John Lewis, Leeds where a display of the full range of Knockers will be on show.
Details of these events are on the website and also the public Facebook page for the group.
For more details about how to order Knockers or how to volunteer see their website
Macmillan Information Centres can be found in many of our regional hospitals – and they are a brilliant one stop shop for information, support and advice. Here we look at the Macmillan Information Centre located next to the main reception area at Rotherham Hospital. The Centre is the first to hold the Macmillan Quality Information Standard in South Yorkshire.
Meet the team Paula Lowson and Angela Eyre are job share Information and Support Managers at this busy Centre, which includes a large open area full of information leaflets, and a lovely private space for one to one chats and consultations. On the day I visited, Paula was on duty. They have worked together for more than eight years and their skills complement each other. Paula, whose husband is a cancer survivor, is an orthopaedic nurse specialist and a former district nurse, who is a passionate fundraiser raising thousands each year. She has been nominated for the national Douglas Macmillan Award.
Angela, who is a qualified therapeutic counsellor in person centred counselling, and a mindfulness practitioner is also qualified to offer reiki. Both she and Paula completed the Macmillan Coaching Programme.
Service impact Although Paula and Angela are funded for the equivalent of only one full-time worker, their service has a huge impact. By working in partnership with Rotherham Metropolitan Borough Council’s Macmillan Welfare Rights Team, they offer two days of benefits clinics to cancer patients and carers through an appointment system.
In 2017: £80,963 in Macmillan grants were awarded to
Rotherham clients
£6,854,533 in benefits was claimed for Rotherham clients
In 12 months the service prevented two A&E visits; 195 GP appointments, 55 consultant contacts, 296 cancer nurse specialist contacts and 251 other health professional contacts saving the NHS a whopping £64,380
Paula and Angela and their volunteer team of 10 were nominated in a number of the Trust’s annual award categories
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Out and about The service isn’t confined to the Information Centre. The following are just two examples of the many projects they have helped to deliver:
an information area in Outu Kumpu Sheffield steel factory reaching 250 men and 50 women.
Mindfulness taster sessions and full-day training courses delivered to 500 colleagues both on site and at Wentworth Woodhouse, Rotherham.
Walk and Talk Group One of their newest projects is the Walk and Talk Group. Paula and Angela realised there was a need for more follow up care for cancer survivors in the local area. This need was identified by researching local facilities and working with local partners. Although some provision for health and wellbeing was established, it was not cancer focused. This evidence also supported the experiences of two of the walk leaders who assisted with the research and with setting up the scheme. Now there are four walk leader volunteers and they have carried out two 16 week programmes, which have evaluated very positively.
Patient and carer feedback in 2017: 3237 people used the service
1535 used the drop-in services
1702 took leaflets or books To gather feedback, there are questionnaires left in the public area and comments include:
“Please bottle Paula and make her available
everywhere”
“We got all the help we asked for from a lovely lady”
“It’s been so helpful knowing there is somewhere I can
come and talk”
“I could not put into words how much this service has
meant to me. I lost my health, my home and my
father, all in a week. Only the advisor was there for
me and did everything to bring me back. I will never
be able to repay the debt I owe this wonderful lady.”
Opening hours The drop-in service is open to anyone affected by cancer from Monday – Thursday 10 am – 4pm and from 10 am – 12 noon on Fridays. Appointments are available through their booking system for face to face support, telephone or email support, which is offered outside of these core hours. Tel: 01709 427655
Yorkshire Cancer Patient Forum Here at the Yorkshire Cancer Patient Forum we are keen to find out about the quality of care you have received as a cancer patient, and in particular, the role played by a clinical nurse specialist (CNS), who may also be called your keyworker or support worker or care coordinator. The CNS or keyworker plays an extremely important role in each patient’s care (often called pathway of care). They provide support through the pathway from diagnosis, to treatment and follow up and beyond including supportive care.
A total of 90% of cancer patients were given the name of a CNS according to the National Cancer Patient Experience Survey for England 2016. We would like to find out more about the picture in Yorkshire and the Humber. Please visit this link to take you to our survey
www.smartsurvey.co.uk/s/1VC0J/ Please fill out your survey by 30/09/2018
Chief Constable of West Yorkshire Police Dee Collins CBE
Back in 2009, Dee Collins was relatively new in her post as Assistant Chief Constable of Derbyshire Police. She was single and career orientated, and enjoyed outdoor pursuits in her spare time. She had always been close to her late grandmother, who had encouraged her to apply to the Police. One evening she dreamt her grandmother was talking to her while she slept and telling her it was time to get up. She woke up, with her hand cupping her left breast and felt a lump. She made a GP appointment and very quickly was offered a scan then biopsy when her breast cancer was confirmed. Dee chose to be positive throughout. Fortunately she didn’t need chemo and even managed to return to
work for two weeks before her schedule of radiotherapy treatments. It wasn’t until the treatment came to an end that she experienced depression. “I had been fighting for my life, the centre of attention. But then I started to worry, I was no longer surrounded by the medical profession” she recalled when she visited Breast of Friends breast cancer support group, Wakefield. She also regretted not joining a support group where she could have shared her concerns with others going through the same condition. Since her diagnosis, Dee married a good friend, who supported her through her treatment. She said: “I am a far stronger, more passionate and thoughtful woman as a result of having cancer.” She remains positive, takes each day as a bonus and has encouraged an open and frank dialogue about mental health and wellbeing with her Police colleagues.
Local cancer support groups – here are some of the members of the Leeds Myeloma Support Group pictured after their August meeting outside of the Sir Robert Ogden Macmillan Centre, St James’s Hospital, Leeds. Their group leader, Rita Rumsey is pictured in the foreground in bright pink. Anyone interested in this group should contact [email protected]
What's going on near you? Find out about support groups, where to get information, and how to get involved on the Yorkshire Cancer Patient Forum website.
Go to https://www.yorkshirecancerpatientforum.co.uk/cancer-support-groups
