Beating cancer: ambition and action

6. Improving Treatment

Our Ambitions

To ensure that people with cancer have equity of access to sustainable, high quality, timeous treatment.

To reduce variation in practice/inequities in access to the most advanced treatments in accordance with individual clinical need and thereby improving outcomes.

To see that everyone who would benefit from it has access to advanced radiotherapy.

To ensure people are the lead partners in their care, able to make informed choices and know what is happening when and why.

We know that over the coming years the demographic changes in our population will bring an increasing demand for cancer treatments which means that more people than ever before will require access to high quality cancer treatments and services that offer the best possible outcomes.

Our National Clinical Strategy makes clear our ambition that, where clinically appropriate, services should be planned and delivered at a local level. Where there is, though, evidence that better outcomes could only be reliably and sustainably produced by planning services on a regional or national level, we must look to the future and plan our services on a population basis regardless of geographical boundary.

There has been substantial investment over the years in improving cancer treatment services in Scotland. For example, since 2011, £11.5 million has been invested to improve cancer services capacity in NHS Boards, and £22 million has been invested in the Beatson West of Scotland Cancer Centre satellite radiotherapy facility at Monklands Hospital which was opened in November 2015.

We will build on that record and invest in the most appropriate services to ensure that people living with cancer have access to sustainable, high quality, person-centred treatments.

Treatment for cancer varies by tumour type, stage at diagnosis, the age (child or adult) of the person undergoing treatment as well as general health status. Treatment may involve surgery, radiotherapy, and chemotherapy (including drug therapy, hormone therapy and other agents) singly or in combination and in some instances all three modalities.

In many instances, particularly where a tumour is diagnosed at an early stage, evidence shows that cancer can be and is cured and even in some later stages people often now have many years of life to look forward to after treatment. This is illustrated in breast cancer where 5 year survival has increased substantially from 70.7% for those diagnosed between 1987 and 1991 to 88.0% for those diagnosed between 2007 and 2011.^[58] This improvement in survival is likely to be due to a combination of factors including earlier diagnosis in women participating in the Scottish Breast Screening programme, improvements in treatment, and better organisation and delivery of care.

It is essential that when considering what treatments to recommend, healthcare professionals involved in people's care - commonly called Multidisciplinary Teams (MDTs) - engage also with people with cancer, their carers and families, carers and their families to ensure that the treatment 'package' agreed is tailored to the person's individual circumstances so that people can get on with their everyday life as far as possible.

Evidence-based guidelines developed for people with single diseases should not necessarily be extrapolated to manage individuals with multiple conditions. This may inadvertently result in over-treatment and over-complex treatment regimens, particularly in people with cancer. This is likely to be an increasingly common issue as our population ages, but this is also a scenario that is avoidable, thus reducing potential harm.

We want to foster a culture where healthcare professionals and individuals can combine their expertise and be more comfortable in sharing the responsibility of decision making best suited to the needs of the individual.

It is important that GPs and primary care teams are also aware of, and as far as possible, involved in these discussions and conclusions as soon as practically possible to allow them to effectively support and advise people with cancer and their families while they are receiving treatment. Indeed, for people undergoing chemotherapy this relationship with the primary care team is vital and in some cases working well across Scotland as blood tests are taken by local surgeries/district nurses and relayed to relevant laboratories so that results are back before scheduled chemotherapy sessions.

There is almost certainly a role for Primary Care in follow up and monitoring of people with cancer after cancer treatment, whilst allowing rapid access to specialist care should potentially sinister symptoms recur.

Capacity within specialist cancer care to manage the essential interactions with people with cancer must be protected and facilitated by other health professionals participating in managing care and support after treatment. There are excellent examples of rural chemotherapy services delivering treatment supported by cancer centres, including services in Lochgilphead, Lorne and Islands Hospital, Western Isles Hospital, and Elgin Memorial Hospital. These services are developed in cooperation with larger centres to facilitate local access to cancer treatment.

No matter how well existing processes are working in support of people with cancer there is always more that can be done to improve their care experience. This means listening to the feedback from individuals and carers/families but it may also require system and organisational change to promote and deliver the roles and skills necessary for true person-centred care.

Such system change is articulated in models such as the House of Care,ⁱ which provides a useful representation of the components, all of which are required, to place collaborative, relational decision making and planning at the heart of person-centred.

ⁱ Scotland's House of Care, information available from https://houseofcare.wordpress.com/.

We can and must do more to reduce inequities in cancer treatments. New processes are expected to improve access to medicines, however challenges remain in providing equitable access to high quality surgery and radiotherapy.

We know that most people diagnosed with cancer will need a combination of these treatments therefore we must ensure that when planning improvements in these areas, that this done in an integrated and complementary manner and that the pathway of care is as equitable as possible across Scotland.

Surgery

Surgery remains one of the most important treatments for cancer. NHS Boards in collaboration with the three regional cancer networks must continue to focus on ensuring that there are the right facilities, in the right location to meet the demand for surgery across all the relevant specialist surgical areas, for example urological (prostate, kidney and other urological cancers), upper gastro-intestinal/hepato-biliary cancers, bowel, breast, thoracic (lung). We have set out the projected incidence of cancers which will aid NHS Boards in understanding how the demand will impact on service needs in the coming years.

Since 2008, significant reductions in variation in surgical practice have come about through a mixture of reconfiguration of services, specialisation, peer reviews and multidisciplinary teams becoming widely embedded in day to day practice. Variations in surgical activity and outcomes still remain. For example, the appropriate selection of people requiring surgery in 2013 for upper gastrointestinal cancer was found to be as low as 24% in some NHS Boards and as high as 100% in others. Similarly, 90-day mortality for people with upper gastrointestinal cancer following surgery varied across NHS Boards between 0% and 25%.^[59]

Evidence of this kind is crucial if we are to plan and deliver the best services possible for people with cancer. There is growing evidence that specialist surgeons practising in high-volume hospitals produce better outcomes for certain procedures. For example, a specialised urology unit in Germany had a 5 year prostate cancer survival rate which was only slightly higher than less specialised units treating lower volumes.

The specialised centre had a rate of permanent severe incontinence of 8% that was a quarter of the rate of the other units, and a rate of impotence that was around one-third of the other units. These are serious quality of life issues that have an obvious impact on people with cancer.

Another review showed that consolidation of care resulted in an improvement in 5-year survival from 58.6% to 68.6% for all gynaecological cancers that could be staged and graded. These changes have been most marked with endometrial and ovarian cancers.^[60] A further report considered the impact of a reconfigured regional upper gastro-intestinal cancer service. "The curative to palliative treatment ratio increased by 71%, operative morbidity fell 50%, lengths of hospital stay reduced on average by 3 days, median survival improved by 20% and overall 1-year survival improved by nearly 20%.^[61]

Although evidence exists to support the delivery of surgery in fewer highly specialised units for some tumour groups, it should be recognised that this is not the case for all tumour types or procedures. For instance, breast cancer surgery is most often now delivered as a day case where it is possible to carry out wide local excision (lumpectomy) rather than mastectomy which was in previous years the surgery of choice.

We therefore need to carefully balance the benefits of improved outcomes achieved through maximising resources and clinical skills with increased specialisation, with the opportunities for minimally invasive or less invasive surgery delivered as locally as possible.

We are already aware of increasing pressures in urological surgery services. The National Planning Forum is currently assessing the range and type of work required to improve these services. This will be taken forward through Regional Planning Groups and will involve clinical colleagues reviewing and preparing a specific strategy for improving urological cancer pathways during 2016-17. They will also assess the requirement for additional diagnostic and surgical capacity. We are committed to looking at potential further investment, beyond what has been identified for this strategy, that may be needed so as to deliver sustainable urological surgery services for the future.

It is important to recognise that while individuals may be expected to spend time in a major centre of expertise for some highly specialist and/or complex treatment, prior to that treatment and subsequently, support should be provided locally through primary and community care and via local hospitals, across the most appropriate range of care needed, such as home visitors and telehealth services. This will help ensure that people receive the benefit of specialist expertise combined with local access.

New Techniques/technology advances

Advanced techniques such as minimally-invasive surgery and image-guided interventions are continuing to revolutionise the way we treat a significant range of tumour types and thereby speeding up recovery times and improving an individual's experience.

An example of this can be seen in the advancement of laparoscopic techniques which are already improving the recovery and outcomes from cancer surgery. In 2015 we commenced a programme to introduce robotically-assisted laparoscopic surgery for prostate cancer in Scotland. This will bring benefits in terms of faster recovery, less time spent in hospital post-surgery, better outcomes and improved quality of life.

The first robot was introduced in Aberdeen in 2015, supported by £1 million capital investment from Scottish Government. Initially this will be for the treatment of prostate cancer, where the evidence base is strongest, but in future robot-assisted minimally-invasive techniques might also be used for other indications if evidence shows that this would be beneficial.

Radiotherapy

Radiotherapy is an increasingly important component of modern cancer treatment and will remain so for the foreseeable future. International modelling shows that approximately half of all people with cancer would benefit from radiotherapy at some point in their treatment.^[62] This may be given as the sole curative treatment (for example, cancer of the larynx), as part of a treatment plan incorporating surgery and/or chemotherapy for palliative purposes.

All Scottish radiotherapy departments have a comprehensive range of state-of-the-art linear accelerators and associated equipment capable of delivering the most up-to-date/technically complex treatments. £60 million has been invested in updating radiotherapy equipment in the 4 years to 2014-15.

In addition to the predicted substantial rise in demand for radiotherapy, the complexity of planning and delivering these treatments is also likely to rise as the role of newer techniques becomes more clearly defined and incorporated into standard practice.

Recent advances in radiotherapy have allowed radiation doses to be targeted more precisely and therefore require fewer radiotherapy sessions.

Intensity Modulated Radiotherapy (IMRT), Image Guided Radiotherapy (IGRT) are two advanced radiotherapy treatment options that are becoming routine in clinical practice across Europe most notably for the treatment of cerebral metastases and skull-based tumours. Similarly Stereotactic Ablative Body Radiotherapy (SABR) is increasingly being used for the treatment of lung cancer.

Adoption of more advanced radiotherapy techniques requires additional support and investment in software and staff training. New treatment protocols also demonstrate that fewer doses, or 'fractions', can often be used while achieving the same efficacy.

Chemotherapy

Chemotherapy and other systemic therapies also play an essential role in the treatment of cancer. Chemotherapy, like radiotherapy, can be used as a curative treatment, as part of a treatment plan incorporating surgery and/or radiotherapy and/or in a palliative capacity.

Chemotherapy can affect people in a variety of different ways and can often carry the risk of short-term and long-term side-effects. Safe delivery of chemotherapy is supported by information technology (IT) systems, including an appropriately specified electronic prescribing and administration system. This is essential to ensure that when undergoing chemotherapy individuals, carers, primary care and out-of-hours services can access information detailing the nature of the chemotherapy treatment regime, any potential side effects and appropriate management information at any time of day or night.

Cancer centres and local hospitals providing chemotherapy already have systems in place to support chemotherapy delivery but further improvements are needed.

Systemic Anti-Cancer Therapy (SACT)

SACT encompasses both biological therapy (therapies which use the body's immune system to fight cancer or to lessen the side effects that may be caused by some cancer treatments) and cytotoxic chemotherapy (a group of medicines containing chemicals directly toxic to cells preventing their replication or growth, and so active against cancer).

In 2012 we set out revised guidance^[63] for the safe delivery of systemic anti-cancer therapy. The SACT working group, convened by Healthcare Improvement Scotland in September 2012, developed a Governance Framework and audit tool to support the implementation of this guidance and to assist NHS Boards in self-assessing SACT services.^[64]

It is essential that all NHS Boards submit SACT related data regularly and consistently to support quality improvement of services.

Access to medicines

We have introduced a range of changes in recent years which are seeing an increase in access to new medicines, including cancer medicines, in Scotland. We want to continue to see the appraisals system for making medicines available on the NHS evolve.

Fair pricing of cancer drugs remains a challenge and we will consider our systems to ensure that Scotland gets best value. We also need to do more in taking a systematic approach to whether new medicines deliver the value that has been shown in clinical trials. We are supporting a project led by NHS Greater Glasgow and Clyde on the clinical effectiveness of cancer medicines in a real life setting.

While the focus is often on new medicines, the increase in repurposing of older off-patent medicines presents opportunities for improved outcomes. Unlike newly licensed medicines there is currently no comprehensive approach to assessing repurposed off-patent medicines and recommending their use across Scotland. There is a need to ensure that we are well placed to maximise the opportunities of these medicines and therefore work will be undertaken to establish what improvements can be made to our current approach.

Molecular Pathology

Molecular Pathology services have been nationally commissioned as a single designated multi-site national specialist service for NHSScotland from 1 April 2013. Tests are provided on four sites within regional centres - Aberdeen, Dundee, Edinburgh and Glasgow with work ongoing to reduce unnecessary duplication and ensure equity of access across Scotland. These molecular genetic and cytogenetic laboratories work collaboratively to provide a range of molecular and cytogenetic tests as determined by the Scottish Genetic Laboratory Consortium.

The Molecular Pathology Consortium (MPC) Steering Group provides a forum for collaborative discussion and decision making on molecular pathology testing in Scotland. Decision making on tests provided nationally are taken by the Consortium on the recommendations of the Molecular Pathology Evaluation Panel (MPEP).

MPEP has responsibility for evaluating molecular pathology tests based on available evidence. Tests are assessed against set criteria and the Panel makes recommendations to the MPC on the clinical validity, analytical validity and clinical utility of tests that should be provided on a national basis in Scotland.

Precision medicine is also an area which will have a large beneficial impact in the treatment of cancer and within this genomics has the potential to transform oncology and cancer care and outcomes. The research chapter has more detail on plans in these areas.

Waiting Times

We are committed to ensuring that all those who require treatment for cancer should receive that treatment as soon as clinically appropriate and that people are provided with a clear treatment summary in a way that is most appropriate for their individual needs.

Cancer waiting time targets were first announced in Cancer in Scotland: Action for Change (2001).^[65] Better Cancer Care, An Action Plan (2008)^[66] reviewed and replaced these waiting times with two more challenging targets:

• a 31-day target from decision to treat until first treatment for all new cancer diagnoses (irrespective of the route of referral into the system); and
• a 62-day target from the date of urgent referral with suspicion of cancer to date of first treatment. This 62-day target includes referrals from national cancer screening programmes.

It is acknowledged that the pathway to diagnosis and staging (and therefore to a decision-to-treat date) can involve several medical investigations and decision-making processes. There is evidence that the complexity of the diagnostic, staging and treatment pathways is increasing and that there are considerable differences in pathway complexity across tumour types that makes a 'one size fits all' approach to measuring access less meaningful and person-centred.

62-day cancer access standard performance is one indicator of the impact of diagnostic demand on the system.

We have seen improvement in waiting times performance since 2007. In Q1 2007, 1,764 people (84.5% from 2,088 eligible) were treated within the 62-day standard. In Q3 2015 2,757 people (90.0% from 3,064 eligible) were treated within the 62-day standard.

The 31-day standard has been consistently met since its introduction in 2010 with the median wait only 7 days in Q3 2015.^[67]

We recognise that these targets are challenging for NHS Boards given the increasing pathway complexity. We have therefore introduced closer scrutiny and performance support measures, and provided an additional £5.25 million to NHS Boards to improve performance in 2015.

To ensure first treatment occurs within the 62-day timescales, an early first appointment to see a consultant is expected. In choosing not to apply targets for first outpatient appointment or cancer pathway diagnostics, the aim was to minimise the burden of data collection and allow NHS Board resources to be used appropriately to meet the treatment time standards. Therefore, for many of the current 62-day tumour specific standards there is an expectation that patents will have an initial consultation within around 2 weeks, and that, where appropriate, diagnostic and staging investigations can be completed within around 2 weeks of that consultation.

We anticipate a challenging position in diagnostic capacity. By 2039, the number of people in Scotland aged 65 or over is expected to increase by 53% to 1.5 million people.^[68] Given the incidence of cancer amongst older people, this will have considerable impact on NHSScotland diagnostics capacity and suspected cancer referrals.

Targets must be person-focused, provide clear clinical benefit and be considered against the risk of unintended consequences.

Children And Young People

Our commitment to improving outcomes for children and young people with cancer is absolute.

Cancer is relatively rare in children, accounting for less than 1% of all cancers. In Scotland there are approximately 150 new cases every year. Leukaemia is the most commonly diagnosed cancer in children and this, together with brain tumours and lymphomas, account for more than two-thirds of all cancers diagnosed in children. Cancer presenting during early adult life between 16 - 25 years is rare with approximately 180 cases occurring in Scotland.^[69]

The Managed Service Network for Children and Young People with cancer (MSN CYPC), which has been in place since in April 2011 is charged with delivering the Scottish Government's vision for cancer services - to ensure that children and young people in Scotland with a diagnosis of cancer attain the best possible outcomes, have access to appropriate specialist services, as locally as possible that are both safe and sustainable, and that the pathway of care is as equitable as possible regardless of where they live in Scotland. The MSN is continuing to embed the Getting it Right for Every Child (GIRFEC)^[70] which should ensure that this holistic approach to improving wellbeing is evident throughout children's cancer services. It aims to improve the wellbeing of children with cancer across all domains: ensuring safety; improving health; maximising achievement; ensuring they are nurtured; being as active as possible; having their rights and views respected; developing their personal responsibility; ensuring they are included in their community.

The MSN launched its second Cancer Plan; Right diagnosis, right treatment, right team, right place; The Cancer Plan for Children and Young People in Scotland 2016-2019^[71] which moves to the next phase, ensuring that the child is at the centre and it takes account of relevant legislation and strategies that have emerged since 2012. The Plan sets out how it will achieve its aim of "Right Diagnosis, right treatment, right team, right place". Priorities identified for people with cancer include:

• early diagnosis and ensuring treatment is started without delay;
• equitable access to the appropriate care and support at time of first diagnosis;
• an identified key worker at every stage of the care pathway;
• provision of information which will also be made available to families and carers;
• knowledge that their treatment has been discussed nationally to ensure that care is given safely in the most appropriate place;
• access to appropriate clinical trials and recruitment to those trials;
• care will be age appropriate;
• access to holistic care will be equitable;
• there will be an ongoing assessment of needs during and after treatment; and
• ongoing support after cancer to ensure the best quality of life after treatment.

Actions - Improving Treatment

• Apply the National Clinical Strategy to cancer services, keeping services as local as possible and exploring those surgical interventions that would be better delivered by planning services across a larger population.
• Invest a further £2 million of capital to support our nationwide programme which will see two further robots for prostate cancer surgeryin place, one in Glasgow and one in Edinburgh.
• Invest further £39 million in radiotherapy equipment over 5 years. This includes £8 million investment in 2016-17.
• We will also invest in two radiotherapy physics trainee posts over 2015-16 and 2016-17 to help build capacity in radiotherapy services.
• Introduce a new gene expression profiling test for all women with breast cancer who would clinically benefit from it, Oncotyope DX. The Molecular Pathology Evaluation Panel advised on this, the test aims to improve the targeting of chemotherapy in breast cancer by more accurately identifying individuals who will gain the most benefit. It is estimated that this may help around 25% of relevant women avoid unnecessary chemotherapy treatment.^[72]
• Examine whether additional targets for treatment or diagnosis would improve outcomes for people with cancer
• Invest an additional funding of up to £2.5m to enable the MSN to lead and deliver the improvements set out in their second Cancer Plan.
• We will consider the recommendations from the independent review on new medicines reporting in Summer 2016 and what further changes need to be made.
• We will invest £7.5 million over the next 5 years to support improvements in surgical treatments, including urological cancer surgery.
• Invest £1 million in a project led by NHS Greater Glasgow and Clyde on clinical effectiveness of cancer medicines in a real life setting.
• We will assess what improvements can be made to how we maximise opportunities for access to off-patent drugs.