In September 2013 AHP Scot Blog was taken over by a group of AHPs who were keen to raise the profile of their work within cancer services. This month another group aimed to do the same.
Whilst both sessions have brought a wide range of viewers, a number of likes and a series of comments to the blog, a lot more needs to be done to make AHPs, and indeed cancer rehabilitation, a core part of cancer pathways.
This month’s blogs challenged us to consider age old practices; illustrated how lifestyle changes and AHP-led therapeutic interventions could improve experience and clinical outcomes; and showcased how small and seemingly simple changes to service provision could improve response times and patient satisfaction. Together these blogs highlight the need to think differently and the importance of AHP roles. When considered in the context of a rising incidence of cancer, increased survivorship rates and the occurrence of late effects which can be debilitating and resource intensive, it is even more obvious that we cannot continue on the same path as before and innovations, research and services such as these must be developed further.
The integration of health and social care, and programmes of work such as Transforming Care After Treatment (TCAT) certainly have the potential to provide AHPs with opportunities to engage in multiple stages of the patient pathway, and make a real difference to care and outcomes.
However, AHPs must be willing and able to join these programmes of work and come armed with facts and figures to support their interventions. This blog is therefore a call to action; I urge you all to continue the #AHPCancerRehab conversation, and to share your work and discuss new ways in which we can expand our reach and support people to live well beyond a diagnosis of cancer. To support you in this task a community of practice has been set up. The community is open to all, as that in itself may help to make the professions easier to access and understand; however only those who join can add content, start or engage in discussions and support each other through a shared purpose. I therefore encourage those with an Athens username to join and share. AHP Scot Blog is also encouraging further submissions, so if you have a service or an improvement or an idea you want to tell the world about get in touch via firstname.lastname@example.org or find us on twitter @AHPScot. You can also comment below, share these blogs with colleagues and friends, and you can contact the authors directly or you can contact me; my details are below and I would be happy to hear of any innovative ideas or services.
Thank you for reading and most importantly thank you for participating.
A project update from NHS Lanarkshire Dietetic’s Team….
Hi! We are Eve and Alicia, Dietitians from NHS Lanarkshire who have been given the opportunity to improve our services to people with cancer as a result of combined funding from Lanarkshire’s Cancer Strategy and NES (NHS Education Scotland).
As the number of people being diagnosed and treated for cancer increases, Lanarkshire’s Cancer Strategy document (June 2013- June 2016) outlines targets to develop cancer care, focusing on appropriate prevention, screening, diagnosis, treatment, rehabilitation, and support services for the growing population of people living with cancer. Optimal nutrition is a key component at every stage of a person’s cancer journey as it is known to improve outcomes of treatment and quality of life. In this week’s blog, we would like to share the progress on our project thus far, and outline some newly implemented and exciting changes within our department.
The initial aim of our project was to improve the dietetic referral process for people with a cancer diagnosis who are nutritionally compromised (of course, it has since grown arms and legs!). In line with the NHS Scotland Quality Strategy, our service strives to provide a safe, effective and equitable service, ensuring people are provided with person-centred nutritional interventions in the right place at the right time.
Initially, extensive scoping of current service provision was carried out in order to prioritise key areas for improvement. Listening to experiences of other Health Professionals using the service, and gathering evidence from patient surveys resulted in a real understanding of current issues affecting the delivery of treatment.
Across both acute and community dietetic services, almost half of patients surveyed did not fully understand the role of a Dietitian and the reason for their referral. This is no doubt a contributing factor to the high ‘did not attend’ (DNA) rates experienced across the service i.e. 45% non-attendance over a 6-week period in a specialist upper GI cancer clinic. A small audit was subsequently carried out in which patients from this clinic were called to identify reasons for non-attendance. Routine responses included: the stresses of multiple appointments, feeling too unwell to attend in person and again, lack of understanding of a Dietitians role. For this patient population, telephone based reviews at the convenience of the patient, were identified as a significant component of the Dietitian’s workload. As a result of this, over a one-month period, all newly referred patients with an ppper GI cancer diagnosis were given a phone call to offer either telephone assessment or face-to-face clinic appointment (unless otherwise identified as requiring home visit). Routinely all of these patients would have been automatically appointed to out-patient clinic. This test highlighted that for 76% of patients called, an out-patient appointment would not have been the most appropriate method/location of assessment. The likelihood of cancellations/non-attendance by these patients would therefore be increased.
In response to the above, and with the aim of improving patient-experience and access to services, we are taking a more person-centred approach and rolling-out formal telephone clinics for the sample group. All new referrals will also be telephoned by dietetic secretaries and given the option of telephone or face-to-face clinic. In doing so, we hope to reduce out-patient non-attendance and thus improve use of our resources.
In addition to this, patient information leaflets have been developed and these will be posted to patients. The leaflet ‘Introducing Your Dietitian’ explains our role and the benefits of nutritional intervention throughout a cancer experience. We have also identified representatives from across the dietetic service who will help us to build our dietetic website and thus enable better signposting for the public, patients, their families, and other healthcare professionals. It will also highlight further the important role of Dietitians in caring for people with a wide variety of conditions.
There has also been significant quality improvement taking place within the community dietetic department. Cancer care within this department generally falls within the remit of the oral nutritional support service with the majority of assessments taking the form of domiciliary visit. Evaluation of the existing service has identified a lack of standardised triaging of referrals. Instead triaging outcomes are dependant on clinician, workload and locality which clearly impacts upon equity. Feedback from acute dietetic teams and other referring agents such as specialist nurses and GP’s, expressed concern over this; highlighting the possible risks that may arise with a lack of effective prioritisation. To address this, a trial of a telephone triaging system, developed with the community dietetic team, is currently underway in the early stages. This will see Dietetic Assistants using a set telephone pro-forma and scoring system, based on a series of questions regarding weight history, eating patterns and symptoms. It is proposed that this will enable equitable triage of all new referrals within 5 working days of receipt. Patients will then be scheduled for home visits or urgent telephone assessment dependant on clinical need, within the appropriate timeframe. It is hoped that unnecessary home visits will be reduced, reassurance given to patients that referral has been received, and that confidence will be re-instilled in our service for referring agents.
Initial feedback from both staff and patients involved in this test of change has proved promising and further data collection will enable us to evaluate the triaging pro-forma and develop this new pathway.
By May 2016, we aim to have a dietetics service that can rapidly respond to the needs of nutritionally compromised patients with cancer, at any stage of disease. By streamlining the systems currently being trialled and exploring expansion of these to different tumour groups and across sites, we will be improving care and service accessibility, and we will provide more co-ordinated care.
Thanks for reading our blog! We would be grateful for any comments or feedback on our work thus far, particularly if you have experience of similar issues or pathways within your health board. Please feel free to contact us on Eve.McCalmont@Lanarkshire.scot.nhs.uk
As the lymphoedema lead for NHS Ayrshire and Arran I have been involved with lymphoedema on a national level; as a lymphoedema specialist physiotherapist I deal with lymphoedema on an individual basis. I would like to tell you a little bit more about both of these roles.
At a National level there has been a lot of work put in towards recommendations for lymphoedema care in Scotland. These recommendations were set the Scottish Medical and Scientific Advisory Committee (SMASAC) Short Life Working Group on Lymohoedema, who aimed to make recommendations which would enable the delivery of a high quality and equitable service for all lymphoedema patients in Scotland irrespective of their diagnosis or postcode. These recommendations are now being taken forward through the individual health boards. There is also a well established Network of Lymphoedema Practitioners in Scotland (SLPN) where members representing all health boards attend meetings to develop lymphoedema care further, as well as share practice with other practitioners. The group has been involved with the development of a website to centralise information on lymphoedema for doctors, nurses and AHP’s. The website is fairly new, but has had positive feedback from various health professionals.
Our local service in Ayrshire and Arran provides lymphoedema care across all 3 health and social care partnerships, for all types of chronic oedema, and has a mixed-skill team of specialists. A lot of our patients have had a cancer diagnosis due to the high incidence of lymphoedema following treatment of certain cancers, e.g. breast cancer. As treatment has become less invasive and more precise, the incidence of cancer related lymphoedema has reduced. On the other hand, more people survive cancer for longer, and many live longer with a secondary cancer. So there is still a population of lymphoedema patients with a history of cancer or with a diagnosis of secondary cancer.
As lymphoedema is a chronic condition, having a swollen body part can be a constant reminder of having had cancer. I deliberately used the word body part as most people know about arms and legs being swollen, but depending on where the cancer was, you can have oedema of the trunk, breast, genitals or head and neck. The aim of treatment for lymphoedema would be to have as little oedema as possible; the less swelling, the fewer complications.
Treatment for lymphoedema is based on self management: educating patients to look after their oedematous body part with a daily routine of skin care, exercises and wearing compression garments. More self management information can be found here. Lymphoedema should not stop a person from being active. People should be able to take up any activities/sports that they used to do or should be able to take up new activities/sports. However it is common for individuals to be concerned about exercising with lymphoedema, thinking it can make the swelling worse, but there is no evidence to support this assumption. As being active has so many other health benefits from supporting weight loss, to reducing the risk of (secondary) cancer, we would encourage people to be as active as possible. The key to resuming activities or starting new activities is in easing yourself in. It is important to gradually increase the level of activity (in intensity and duration), not the type of activity.
Having lymphoedema can have a big impact on someones quality of life and well being: from the self image changes, to difficulty with clothing and being reminded of their cancer diagnosis/experience. The severity of oedema is no indication of the psychological impact for the patient: one patient can be distressed by relativly mild swelling where as another patient can be mentally fine with severe swelling. It is unfortunate that there are still people with lymphoedema who have either no access to treatment (particularly non-cancer patients), who have had to wait for many years before a lymphoedema diagnosis was made and who are confronted with health professionals with very limited knowledge of lymphoedema and the impact it has on their lives (Ref: http://www.lymphoedema.org/) .
NHS Western Isles held their AILIP Engagement Event on a very sunny 15 October at the Cabarfeidh Hotel in Stornoway. 70 delegates attended, an impressive number for the Western Isles, especially as it was our half term break and many people were off island. Those attending were drawn from health, third sector including local and national representatives from the mental health charity Penumbra, patient and carer representatives, and the local authority.
The event was opened by Gordon Jamieson, Chief Executive of NHS Western Isles, who introduced Dr Ron Culley, Chief Officer Health and Social Care Partnership, to the room. Dr Culley took up post in July and attended the event even though he was on annual leave that day.
Chrisanne Campbell, Nurse Director at NHSWI then gave a short presentation on our NDP journey. She told the audience that 27% of the Western Isles population has seen an AHP in the last year – a truly impressive statistic, and even more so given the challenges of offering services to patients in our more remote and rural locations, such as Barra, and always within the 18 week waiting time. When we began co-ordinating our work on the NDP, seven out of 24 indicators were green, but by March this year, 17 of our indicators had reached green status, using the parameters set out by the Scottish Government. The NDP gave us an opportunity to pull all of our work together and allowed us to see exactly how much we were doing in some areas and where we needed to do more in others. There were relatively few areas where we needed to do a big piece of work –mostly around reablement and joint working with our social care partners, and we have made a lot of progress in these areas over the past few months.
By this point, the audience were ready for a bit of chatting themselves. Our first workshop discussion around the first question “What matters to YOU as an individual to keep you healthy, active and independent?” led to some really good feedback and ideas we can take forward locally.
Two patients then spoke and answered questions about their experiences, which had also involved treatment and care in mainland hospitals. Their accounts were powerful and very moving, and illustrated just how enormously positive AHP interventions are, especially in complex and difficult cases. We were all reluctant to leave this part of the event, and were beginning to run a little over time, so a shortened coffee break led neatly into the next two workshop discussions.
All agreed that the workshops were really productive and the room had a real positive buzz . Dr Culley commented later that AHPs are crucial in developing holistic care – a real vote of confidence in our professions!
The event concluded with an excellent lunch and a chance to chat informally; there was a general agreement that it had been hugely worthwhile morning. Although we live in a small community, the chance to meet and talk with people outside our own organisation doesn’t really come along that often and we’re really grateful to the Scottish Government for giving us the opportunity. Locally, we’ve got some excellent pointers to help inform our work and our integration agenda, and we await feedback from the Government and the further development of the AILIP.
By Joanna Mowbray. Physiotherapy Service Lead NHS Ayrshire & Arran
Last month I attended the very inspiring 3rd session of the eNMAHP leadership programme at NES Edinburgh. As my train journey was delayed due to signal problems I had some time to reflect on the day and identify my next steps; one of which was to write my first blog.
Firstly what do I blog about? Physiotherapy? eHealth? Leadership? AHPs? My family? Ayrshire? How do you choose? Nothing too controversial was Fraser’s guideline; he said he had even blogged about his dog. So here goes.
A key theme of the course is that eHealth is an adjunct to other forms of health care. It is not a replacement for all other traditional means of service delivery. How can we use eHealth to supplement or provide an alternative to traditional ways we work?
Sitting in a very full train with many frustrated commuters made me think of another training session I attended this week around winter planning. This delay would have been so much worse if the weather had been severe.
The session highlighted how we need to have plans in place for bad weather not only within our work place but also at home. The scenarios we encountered increased in their severity to the point of no electricity for half of Ayrshire, severe damage to hospital buildings, severe transport disruption due to weather all of which lead to shortages of food, fuel and essential equipment, and the inability to provide care to vulnerable individuals in the community.
A very scary picture that I hope never becomes reality.
During the session I realised I don’t have a home plan. There was no alternative to our normal home practice.
I have no emergency food supply ‘just in case’. I shop weekly and don’t have a back up as I can always pop round to the local store that stays open late.
The only form of heating in house is by gas, however I have discovered since Tuesday that it requires electricity to make it run.
I can remember power cuts as a child when we used to huddle round the fire with candles listen to the radio, play games. Now of course very few houses have fires and we are all used to getting our information digitally from phones, computers TV all of which require electricity.
Sadly I am now at the stage that I don’t have to plan for who would pick the children up from school and care for them when they shut the schools and I have to remain at work or am unable to get home due to bad weather, as they have all left home; however who would look after the dog the cat and the guinea pigs if I couldn’t get home?
The good news is I now have a plan
I have purchased
Tins of food to keep us going for several days
Extra animal food as I normally purchase this weekly
Batteries for my radio
Matches to light the cooker and fire
Some candles for light rather than aroma
Paper copy of all my contacts numbers
The next step will be to contact any of my vulnerable friends and relatives to have a chat about how they can be prepared for severe weather.
Following on from the NMAHP eHealth leadership course I have looked to see what local information will be available digitally and found some useful web pages, however I am sure there will be more.
A lot of the specifics in my winter plan could be linked to using technology to provide solutions in this case, eSaftey. This technology is equally important to eHealth. Using web sites such as www.nhsinform.co.uk and www.nhs24.scot can provide you with alternatives to getting safe and effective advice for your health if you are stuck at home this winter. To paraphrase Dr Owl “Be eHealth wise this winter!”
That’s my first blog completed. The positives are I now have a winter plan for home and the animals and ourselves won’t starve.
A few weeks ago the American Cancer Society published a very comprehensive guide to Colorectal cancer survivorship care which includes a detailed section on health promotion. Top of the list is the recommendation that survivors should achieve and maintain a healthy weight. Indeed weight management is considered a priority standard of care. This recommendation arises from evidence on poorer outcomes from patients with excess weight and recognition that cancer treatments worsen the severity of many underlying chronic conditions.
Weight management is best achieved through decreased caloric intake and increased energy expenditure through physical activity, and patients need guidance on both. In our LiveWELL feasibility study (weight management for CRC survivors) participants reported that when they proudly announced to their health care staff that they had achieved weight loss, the response was often one of concern. In a further study of the attitudes and practices of colorectal clinicians (medical and nursing staff) it was clear that dealing with obesity was seen as tricky – with too little evidence, too little time and skills, and a threat of spoiling the relationship between the patient and the clinician all presented as barriers. Our most recent study (TreatWELL), which offered lifestyle advice from diagnosis to after the end of all treatments, we also found little understanding, support or referral opportunities from healthcare staff. For overweight or obese patients who had lost weight, the general view was that they should be encouraged to “return to normal” and all patients should be encouraged to eat to appetite (even if that meant energy dense, low nutrient creamy cakes, desserts and sugary drinks). Indeed, the general guidelines produced by the dietetic department encouraged pies, biscuits and other high energy foods.
Once upon a time when patients were diagnosed with late stage disease, unintentional weight loss required considerable dietetic skills and nursing know how to avoid further weight loss and indeed to build up the patient after surgery. These concepts have continued, and in our TreatWELL study we wondered if we could turn these around to present weight management in a more positive light.
Many clinical staff are familiar with guidance to promote physical activity, often seen as something positive to offer patients and an opportunity for patients to gain some control over their management. Achieving an active lifestyle and breaking up sedentary time are both important contributors to health and well-being; but they have little impact on weight management without attention to dietary intake. For the overweight, reducing weight is likely to have a greater effect than activity alone. The reality, however, is that many health care staff feel uncomfortable about raising the issue of body weight, particularly if they feel that this might provoke guilt (e.g. the perception that their obesity has caused the cancer) or that it is yet another clinical demand on patients who have been through much discomfort already.
Our approach to the challenge of introducing the topic of obesity to patients is to focus on re-building a healthy body; highlighting the need to maintain (where abilities permit) and improve muscle mass (identified by improved function) whilst also reducing body stores of fat (identified by fat loss) so that overall body composition is maximised, and bodies resistant to further disease are built. This approach moves the emphasis from appearance to internal composition, and should help to improve self-esteem as two important body parameters improve. This approach may also be less likely to induce guilt by offering a different paradigm to that of “slimming”.
A further dimension of lifestyle that requires to be explained to patients is made up of the dual messages of Be Physically ActiveANDAvoid Inactivity. The two are related but need to be addressed separately. For example, we found that patients appreciated a walking plan (with a pedometer) to increase physical activity, but in addition we provided tips for breaking up sitting time (e.g standing whilst taking phone calls, walk round the room when television adverts are on). There is an increasing evidence base on the importance of breaking up sitting time (even in people who are very fit) which includes data from patients with colorectal cancer.
NHS staff have also noted that there are few resources on weight management for colorectal cancer survivors on weight management but Bowel Cancer UK do produce a useful leaflet that provides an excellent starting point.
Cancer survivorship is a growing field as we see more people diagnosed earlier and better treatments. Let’s make sure that those of us working in cancer rehabilitation find ways to optimise guidance and support and re-think some of the old approaches about diet and feeding.
Professor Annie S. Anderson BSc PD PhD FRCP
Ninewells Hospital and Medical School, University of Dundee