Space4aya magazine 2015 English version

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5 Maart 2015, Amsterdam Arena, Amsterdam

SPACE 4 AYA The national seminar for young adults with cancer and their carers.

Follow the Twitter feed: @SPACE4AYA

SPACE4AYA The second national AYA symposium, SPACE 4 AYA, took place at the Amsterdam ArenA on 5 March 2015 and was chaired by Tom van ’t Hek. SPACE 4 AYA 2015 welcomed around 300 participants, including AYAs, doctors, nurses, health insurance companies, psychologists and nursing specialists. The symposium produced significant results, and there are still many activities that can be undertaken to reinforce integrated care for AYAs throughout the Netherlands. This SPACE 4 AYA 2015 magazine covers all the national AYA actions and Dream Teams that resulted from the second AYA seminar.

Hyacinth Action


The results of the first national HAYAcinth Action were also presented during SPACE 4 AYA. On Friday 23 January 2015, AYAs, their loved ones, volunteers and healthcare professionals sold hyacinths at seven hospitals affiliated to the National AYA Platform, bringing in € 9560.53. The cheque was presented by the hyacinth growers who had donated 18,000 hyacinths to the Platform. A successful follow-up to the action was carried out on 7 March by the Achterhoek-based ABC-bloemisten in collaboration with Flora Holland.

There were also representatives from VOX present at SPACE 4 AYA. VOX is the national network of adults who had cancer as a child. It is part of VOKK (Vereniging Ouders, Kinderen en Kanker; Parents and Children Cancer Association). A central question at SPACE 4 AYA was what the two groups could do for each other. VOKK’s Jaap den Hertogh, who works in the policy area Long-Term Effects of Childhood Cancer (LATER), was present. Jaap was very clear at the end of the afternoon: collaboration would have many advantages. To do - Start up LATER-AYA-VOX Dream Team



Jong&Borstkanker ‫@‏‬BorstkankerBlog Programmes @SPACE4AYA perfect for fanning during hot flushes. #hormonetherapy #breastcancer #space4aya

AYA4net ‫@‏‬aya4net Hyacinth action: Very pleased with this sum. Part will help fund next year’s @ SPACE4AYA.

Wrap up SPACE4AYA 2014:

work, fertility and long-term effects WORK During the 2014 SPACE 4 AYA seminar, the theme ‘AYA & work’ was discussed extensively. How do you get and keep a job as an AYA? How do you convince employers that you’re not a risk, but a good employee?! Entrepreneur Hans Biesheuvel, founder of Ondernemend Nederland and member of the national AYA & Work Dream Team, kicked off the second AYA seminar. He believes entrepreneurship is key to the future and to dealing with societal challenges. His message: ‘Don’t rely on a CAO or permanent contract for security – rely on yourself. Keep investing in yourself, be flexible and develop your own skills. Use the demands of modern-day society and developments like digitalisation to your advantage. Develop your networking skills; that’s more important than ever. There are definitely opportunities; we need everyone!’ But, he says, don’t wait around at home. Get up and do it yourself. ‘Politicians and the UWV won’t do it for you.’ As well as completely changing the image of cancer and risk, the national Dream Team has also worked hard to provide up-to-date information on ‘Training & Work’ for people who have cancer as an AYA, says Rosemarie Jansen, AYA nursing specialist and board member for the National AYA Platform. An up-to-date overview will soon be presented on the aya4net website.

FERTILITY Breaking taboos around fertility is crucial for AYAs. Following SPACE 4 AYA 2014, AYAs and the AYA nursing specialist were asked about this by the national guidelines committee led by Dr Ina Beerendonk, which is developing an updated guideline on fertility preservation in women with cancer.

LONG-TERM EFFECTS Cancer treatment can sometimes have longterm side effects. It is important for both the patient and healthcare professionals to remain alert for these, says Prof. Jourik Gietema.

To do - Persistently challenge image of ‘cancer and risk’ in all contexts - Adjust ‘training and work’ information on under heading ‘Ik en mijn...’ - Develop enterprising solutions which truly lead to equal job prospects for AYAs - Adjust national guideline for fertility preservation in women with breast cancer - Actions to follow up on the guideline - Functions will be added to the current AYA survival app, developed by the UMCG



Jong&Borstkanker ‫@‏‬BorstkankerBlog What an awesome presenter is David Wright from @TeenageCancer @SPACE4AYA #space4aya

The Netherlands and abroad Debaters

David Wright (BSc Nursing Studies), Teenage Cancer Trust (TCT) Lead Nurse for Teenagers and Young Adults, The Christie Hospital, Manchester, South Cumbria Strategic Clinical Network

Suzanne Kaal, AYA internist/oncologist, Radboudumc AYA Expertise Platform, National AYA Expertise Platform

David Wright (BSc Nursing Studies, Teenage Cancer Trust (TCT), Lead Nurse for Teenagers and Young Adults, The Christie Hospital, Manchester, South Cumbria Strategic Clinical Network) has been working with young cancer patients – TYAs; Teenagers and Young Adults, aged 15-25 – since 2002. Care for TYAs became a priority in England in the 1990s, when it was becoming more and more apparent that this group had specific care needs, as a cancer diagnosis at that age, when you are still forming your identity, throws your whole life out of balance. You go from being completely carefree on one day to being a cancer patient the next. Care for AYAs is different from that for children or older adults due to the patient’s developmental phase, social issues, psychological factors (anxiety, but also enormous positivity), treatment (for example, postponing treatment in the interests of fertility), survival and long-term effects. The first TYA hospital unit was opened in London in November 1990. The first international conference on the subject was in 1994. Since then 30 such units have appeared across the UK, many thanks to the work of charities. There are also special TYA teams and TYA training programmes for care professionals. There are no AYA outpatient clinics in England as there are in the Netherlands, and the TYA units are not always full. A lot of attention is paid to education and raising awareness in schools and among GPs. There are also challenges – it is harder than it sounds to get professionals together to exchange ideas. Care for AYAs must also get more statutory recognition, there is more work to be done in terms of the interaction between charities and the NHS and there are still specialists who ignore recommendations regarding AYAs. David thinks AYAs’ voices need to be heard, so he is enthusiastic about the SPACE 4 AYA symposium and over care 4


Dream team -AYA’s -Panel members

for AYAs in the Netherlands, which is a real co-creation between healthcare professionals and AYAs, which is not the case in England. He will be taking that insight home with him. How are things going in the Netherlands? Suzanne Kaal, an experienced AYA internist/ oncologist, takes us through the history of AYA care in the Netherlands. The national goal is an integrated and uniform AYA care concept for the whole country, in which the medical-technical and psychosocial components work as a single whole. The first contacts with Stichting Jonger-

en en Kanker (Young People and Cancer Foundation) were made in 2009 and resulted one year later in the first AYA outpatient clinic and living room at the AYA Expertise Platform at Radboudumc, Nijmegen. The online AYA4 community appeared in 2010 and went national in 2013 thanks to grants from KWF, Alpe d’HuZes and Pink Ribbon. An AYA project leader was appointed in 2011, marking the start of the AYA Taskforce, a think-tank comprising AYAs and professionals. The resultant Dream Teams, which study concrete subjects and implement solutions, appeared in 2012, and the National Expertise Platform a year later. Last year saw the first national AYA symposium, SPACE 4 AYA, in Nijmegen. Research is being conducted into cancer in AYAs, into which

Jong&Borstkanker ‫@‏‬BorstkankerBlog Patricia Biermans of theatre company Plezant helps @SPACE4AYA audience really understand the day’s theme.

AYA4net ‫@‏‬aya4net What makes young people different? Age, changes in their life, treatment. So many things are different for an #aya.

cancers are treated where, into psychosocial problems, the palliative phase and long-term effects. A KWF Fellowship has also been awarded. On an organisational level, a National AYA Board has been set up for the National AYA Expertise Platform, the necessary fundraising has been put in place (including the national HAYAcinth Action) and care for AYAs has been discussed at professional conferences and on the TV programme Dit is de Dag. As Suzanne puts it, ‘We’re making noise!’ It is crucial that everything happens in a partnership between AYAs and professionals.

To do - Set up more AYA outpatient clinics in the Netherlands with a uniform policy - Stimulate virtual AYA knowledge networks - SONCOS ‘cancer at a young age’ paragraph - Multidisciplinary AYA care module - Raise awareness of the importance of care for AYAs among Dutch public - Structural funding

Patricia & Plezant In between other parts of the programme, AYA Patricia Biermans of the theatre company Plezant put on a moving performance for the visitors in which she showed what occupies her and how she is living life to the full. She expresses a feeling that many AYAs will recognize from when they were told they were ill. ‘This isn’t such a good time. Okay, if we

must... But keep it brief!’ She looks around the hall. ‘Do they know who I am, what I need? How can you know how it feels if you haven’t gone through it yourself?’ She has some advice for doctors: ‘Talk with me, not about me.’ She closes the afternoon with words of thanks for her mother and for AYA. Both have given her life, she says. Her mother

held her hand during chemo, gave her pep talks when she needed them and took her out on walks. Now she wants to throw a party. She wants to believe in the future again. Cancer wears you down, but it makes you stronger too.



Rinske van Kasteren ‫@‏‬RinskevKasteren @AYAEvelieve presents Food for Care – better hospital food – at @SPACE4AYA. I’ve tried it myself, yum!

AYA & nutrition Nutrition is a theme which is very important to AYAs, but a lot of nonsense is spouted about it. The AYA & Nutrition Dream Team has made sure a lot of facts and fables are addressed under ‘Ik en mijn... eten & drinken’ (Me and my... food and drink) on, and that a new hospital food regime – ‘Food for Care’ – has been developed at Radboudumc. As Prof. Ellen Kampman, Professor of Nutrition and Cancer, Wageningen UR, VU University Medical Center and Radboudumc says, ‘Optimal body composition is very important. And how do you get that? By eating a lot of protein, a lot of fruit and vegetables and wholegrain products, and by taking regular exercise (30 minutes a day and strength training at least twice a week, from as soon as possible following diagnosis). Quit smoking and be careful with high-calorie food and drink. Leave alcohol alone as much as possible (1 or 2 glasses a day is the max) and eat red meat no more than 5 times a week. You only need food supplements if you are deficient in something. There are some myths out there: organic products are not necessarily better if you’ve had cancer, you don’t have to strictly avoid E-numbers and artificial sweeteners, and soya milk is not by definition better than cow’s milk. To find out more about cancer and nutrition, visit the new site on, where you can also ask questions. Is the knowledge about nutrition and malnutrition that we have gained through research into paediatric cancer, also applicable to cancer in AYAs and adults? This is an important question for the next speaker, Dr Aeltsje Brinksma,



Dream team -AYA’s -Panel members


Prof. Ellen Kampman, Professor of Nutrition and Cancer, Wageningen UR, VU University Medical Center and Radboudumc

Jaap Buis, Operational Manager, Service and Logistics, Radboudumc, member of AYA & Nutrition Dream Team

Dr Aeltsje Brinksma, paediatric nurse and researcher, University Medical Center Groningen

Dr Eveliene Manten-Horst, National AYA Expertise Platform project leader, chair of AYA & Nutrition Dream Team

Julian Noij, AYA, hospitiality expert and member of AYA & Nutrition DreaFm Team

Marjo Peters, Head dietician Radboudumc

paediatric nurse and senior research at the University Medical Center Groningen. She conducted extensive research into nutritional status and its effects in children with cancer in the Pecannut (Pediatric Cancer and Nutrition) study. A good nutritional status is very important for children with cancer and has a large impact on their quality of life. Malnourished children suffer more pain, fatigue and nausea and show poorer social functioning. They also have more emotional problems, such as anxiety, sadness and anger. This can all lead to more complications, poorer survival chances and a poorer quality of life. Malnutrition on diagnosis means a poorer prognosis; the chance of death is three times greater. Serious weight loss can also lead to more infections. So eating well is important, but patients often have no sense of taste and thus no appetite. How do you resolve that? A game – The Journey of 5 – has been developed for children to make sure they get a positive feeling from eating. In the game, children might make a fruit

Jong&Borstkanker ‫@‏‬BorstkankerBlog Conclusion: if you have cancer, just eat fruit and veg, exercise, limit alcohol. Don’t over-complicate it. #space4aya

Jong&Borstkanker ‫@‏‬BorstkankerBlog Politicians like @arnorutte and @svanweyenberg want AYAs to make their voices heard. So here I am! When’s the coffee? #space4aya

and therefore quality of life, both improved. Patients needed less nausea medicine, the atmosphere on the ward improved, the staff got more pleasure from their work and no food was left on plates. This success begs the question, would other patient groups benefit from this regime? A Food for Care project is therefore currently running across the hospital for several patient groups and scientific research has been linked to the regime. cactus by poking sticks through different sorts of fruit. The first reactions are positive; children eat better thanks to the game. There is also a new, innovative hospital food regime – ‘Food for Care’ – from the AYA & Nutrition Dream Team: Dr Eveliene MantenHorst, National AYA Expertise Platform Project Leader; AYA Julian Noij; Jaap Buis, Service and Logistics Operational Manager at Radboudumc; and Radboudumc dietician Marjo Peters. The results of the first pilot at medical oncology were very hopeful. The patients’ appetite,

To do - update information on nutrition and cancer on - Continue roll-out of Food for Care, incl. outside Radboudumc - Conduct scientific research on Food for Care regime

Video Eveliene Manten-Horst recently visited members of the Dutch House of Representatives to drum up support for AYAs, and the results of her work could be seen at SPACE 4 AYA. Eveliene spoke with politicians from various parties: Steven van Weyenberg (D66), Carla DikFaber (ChristenUnie), Lea Bouwmeester (PvdA), Pieter Heerma (CDA), Henk van Gerven (SP) and Arno Rutte (VVD) spoke about the importance of good care for AYAs and how they can contribute

to it. Van Weyenberg finds it important that work is organised well for AYAs, and wants to develop an action plan to do so. Bouwmeester told the audience she had been 26 when first elected, and could not begin to imagine how it must be to be so ill and to have lost any sense of invulnerability at so young an age. Rutte wants new therapies for cancer patients to become available quickly, and will push this hard. More working visits will follow in the near future.

To do - Make politicians aware of the importance of care for AYAs



Dream team -AYA’s -Panel members

AYAs & mortgages and insurance Debaters Naline Geurtzen, AYA Linde Bögemann, social worker in AYA outpatient clinic, member of AYA-MDO and Radboudumc AYA Taskforce Ernst Arens, insurance advisor at Intermediair voor Chronisch Zieken (ICZ)

Maarten van der Aa, strategy and innovation, Achmea, Care & Health

Prof. Peter Huijgens, IKNL

Joke Verbaan, De Hoop Herverzekering

Hans Hoogeweegen, Medical and Labour Manager, Cunningham Lindsey Nederland

Dr Otto Visser, IKNL

How can you get an affordable mortgage is you have or have had cancer? That is the question the AYA & Mortgages and Insurance Dream Team works on under the leadership of Rik van Dommele. The quest for an affordable mortgage was illustrated at SPACE 4 AYA with a role-play based on reality, in which AYA Naline Geurtzen chatted with a handful of mortgage and insurance experts. First of all, she talked with social worker Linde Bögemann from the AYA outpatient clinic. She said that taking out life insurance is often the hardest part of buying a house. The most important thing is to have the most positive medical declaration possible; that is to say, the truth laid out as positively as possible. It is also important to avoid a rejection. Wait for the result of a medical test first, and then withdraw your application for an insurance policy if necessary. Ernst Arens, insurance advisor at Intermediair voor Chronisch Zieken (ICZ), was the next expert to be interviewed by Naline. The company he works for mediates between patients and insurance companies to make sure the former can still take out life insurance. 94% of people who are rejected in the first instance are able to take out a policy with ICZ’s services, for which it charges a fee. Hans Hoogewegen of Cunningham Lindsey Nederland has a similar story. His company also mediates between patients and insurance companies for a price. They are that great unknown of the world of insurance: reinsurers. The next speaker, Joke Verbaan, works for De Hoop Herverzekering, a company you can contact if you are rejected for a life insurance policy. A reinsurer is a company that insures insurers – if a ‘normal’ insurer thinks the risk from insuring a particular patient 8


is too great, they can choose to insure the patient but to take out a policy with a reinsurer to cover the risk. Next, Naline speaks with Prof. Peter Hijgens of IKNL, an organisation which collates figures relating to cancer patients in the Netherlands. Are insurers always aware of these figures? Peter’s answer was an emphatic ‘no’. The figures are encouraging; AYAs’ survival chances are increasing, which Peter says should mean insurance premiums come down. Maarten van der Aa, from health insurer Achmea, is the next speaker. He kicks off with a short history of health insurance. One of the reasons that they came into being was solidarity with people who could not bear the risks alone. Maarten says that 87% of health insurance applications are accepted immediately, and the rest are referred to a ‘medical acceptance track’. Two thirds of these are eventually accepted under normal terms and conditions. Of those who are left, some are insured for a higher premium and a smaller number are rejected or withdraw their application. Naline asks if the assessment is focused enough on

AYA4net ‫@‏‬aya4net Tip: check out for ten top tips on taking out insurance. @SPACE4AYA #space4aya

Jong&Borstkanker ‫@‏‬BorstkankerBlog Risk of death is often the problem for AYAs who want to buy a house; start there! #space4aya

the individual. ‘There’s room for improvement’, says Maarten. He says that if IKNL’s figures are adjusted to make them usable for Achmea, the insurance company will definitely use them. Peter Huijgens sounded another critical note: insurance company medical advisers are not expert enough. ‘And there are too few’, adds Joke, from De Hoop. To do - Up-to-date information on insurance, including life insurance, and mortgages on - Pursue national ‘mortgages and cancer’ improvement project

Scientific Posters Just like last year, there was an opportunity to present scientific posters. One of the posters details how care for AYAs started at Radboudumc Nijmegen, on the basis of the idea that AYAs have many age-specific problems and needs. AYA care is now being rolled out to other hospitals.

Another poster discusses the pilot of ‘Food for Care in the hospital’, which was based on the question of whether hospital food could be done differently and which united the efforts of AYAs and healthcare professionals to improve it. Actively offering small bites to eat was of central importance.

Two other posters resulted from recent research into to particular forms of cancer: synovial sarcoma and Ewing’s sarcoma.



Jong&Borstkanker ‫@‏‬BorstkankerBlog GPs of the Netherlands: young adults can also get cancer! @SPACE4AYA #space4aya

Dream team -AYA’s -Panel members

Primary care involvement with AYAs and cancer: ‘Rare but present’ Every AYA has a GP, but not every GP (of whom there are 10,000 in the Netherlands) has an AYA patient. That said, 2500 GPs every year see an AYA at their surgery. AYAs are needles in haystacks, but many needles are found every year in the Netherlands. The million-dollar question is ‘how can we make sure GPs and AYAs are able to find each other?’ Dr Henk Schers (GP at Thermion surgery, Lent and Head of Primary Care Networks at Radboudumc) has seen four AYAs at his surgery in the last 15 years, two of whom had leukaemia, one with testicular cancer and the other with skin cancer. Important themes include where AYAs should go with even vague symptoms, how they should communicate with their GP and who is on control. Palliative care, in which GPs play an important counselling role, is discussed. How can GPs work with the AYA to put together a concrete care programme? They could do so, for example, with consultations by video link. At


Dr. Henk Schers, GP at Thermion surgery, Lent and Head of Primary Care Networks at Radboudumc Suzanne Kaal, AYA internist/oncologist, Radboudumc AYA Expertise Platform, National AYA Expertise Platform

Radboudumc, Kaal and her colleagues from the palliative team conducted research into this with the Pall-iPad project for AYAs receiving palliative care. This was included in TV programme Dit is de Dag’s report on AYA care in Nijmegen. This kind of contact using iPads looks promising, even if there are, of course, questions. For example, for whom and when is a video consultation appropriate, and what topics do you discuss? The initial experiences are positive: GPs become involved more quickly and easily, and AYAs save time and energy by being able to have the consultation at home. Suzanne says there is more to be done to find the best way to get GPs and AYAs exchanging ideas as well as possible. Henk suggests AYAs should be allowed to determine how this should be done.

To do - Develop and concretise ‘AYA and GP- primary care involvement’

Some information stands The visitors to SPACE 4 AYA 2015 could also meet various organisations involved with AYA. The organiser, the National AYA Platform, was one of the organisations with a stand, as was the Stichting Jongeren en Kanker, which 10


facilitates contact with peers and answers non-medical questions. The foundation publishes JK magazine every year. Spirit On was present too. The organisation uses a personal inspiration process to help people living with cancer

to use their inner energy to face it. Hacer told her story; thanks to Spirit On, she has since been able to find a job with the police. The first children’s hospice in the Netherlands, run by Stichting Xenia Hospice, could

Jong&Borstkanker ‫@‏‬BorstkankerBlog My GP is one of very few at @SACE4AYA!! How is that possible? #space4aya

not miss SPACE 4 AYA. Xenia, the ‘house with a heart’, offers intensive palliative care for AYAs in Leiden. ‘We are the first and only of our kind in the Netherlands’, says Xenia’s Selma Harmsen. VOX, the national network of adults who had cancer as a child, was also present. It is part of VOKK (Vereniging Ouders, Kinderen en Kanker; Parents and Children Cancer Association) Anouk Nijenhuis and Douwe Pelle were among those talking about to AYAs about how they could help

Jong&Borstkanker ‫@‏‬BorstkankerBlog From the audience: Why should AYA take the initiative? GPs are able to pick up their phones too, right?! AYA has enough going on! #space4aya

each other. ‘The more people you have, the more impact you can make. We’ve already had a lot of positive reactions’, they say. Stylist and inspirational speaker Saskia Ebeli chatted to visitors about skin care, diet, make up and styling for women with cancer. She is currently writing a book and would like to talk to AYAs for it. Other organisations with a stand at the information fair included that AYA team which participates in Alpe d’HuZes, Emma at Work, an employ-

ment agency for young people with a chronic illness or physical disability, the Borstkankervereniging Nederland (Dutch Breast Cancer Association), IKNL, IPSO (the sector association for drop-in centres), the Schildklierorganisatie Nederland (Dutch Thyroid Organisation), Re-integratie, the Stichting Jong Borstkanker (Young Breast Cancer Foundation), Stichting Les Vaux, Stichting Olijf, Stiching Zaadbalkanker (Testicular Cancer Foundation), Vaarkracht and In the AYA lounge AYAs could meet each other and Rosanne van der Ham was there with the ‘Be good to your body’ programme which was developed with AYAs.

Conclusion and more To dos! Many useful insights and concrete follow-up actions have resulted from the second SPACE 4 AYA. Chair of the National AYA Platform Prof. Winnette van der Graaf states that looking for sustainable funding will be a key focus over the next year and international collaboration will also be important. Project leader Eveliene Manten says there is still a lot to be done, for example in the area of AYA & job prospects. In order to guarantee uniform AYA care in the Netherlands, it is necessary to develop a multidisciplinary education module for healthcare professionals on cancer in AYAs. It would be good if the coming years saw the appearance of more AYA outpatient clinics to anchor an integrated approach to AYA care. One idea that came up during SPACE 4 AYA was for the Food for Care regime to be served, to eat in or take away, at AYA outpatient clinics. It could even offer AYAs work experience in hospitality,

improving their job prospects. Scientific research into cancer in AYAs should also be highlighted much better. Thankfully we have good political contacts, having raised awareness about the need for AYA care among members of the Dutch House of Representatives. There will be more working visits between them and AYAs in the near future. And finally... AYAs themselves should decide what should be discussed! Tom van ’t Hek chaired the SPACE 4 AYA symposium for the second time with quite some verve and his charming performance led to concrete ‘To dos’. SPACE 4 AYA was successfully organised in the magnificent Amsterdam ArenA by CongressCare. The catering was taken care of in outstanding fashion by Maison van den Boer



TOWARDS SPACE 4 AYA 2016! Send any ideas to Eveliene Manten on SPACE 4 AYA was made possible by many volunteers. For list of volunteers and sponsors, check out Thanks to all AYAs, speakers, panellists, and collaborators at SPACE 4 AYA 2015!

Colophon Development


National AYA platform

Eveliene Manten-Horst (National AYA Platform & AYA Expertise Platform, Radboudumc)

Eveliene Manten-Horst Dennis Kemperman



Radboud university medical centre, route 452 AYA Secretariat, PO Box 9101, 6500 HB Nijmegen

Felix van Dam Winneke de Groot

Secretariat 024 3613457

Eveliene Manten-Horst

Photography Rudi Bexkens

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