In January 2019, the Digital Health and Care Institute (DHI) began work with the NHS Scotland Breast Surgery Specialty on improving surgery pathways for patients and staff. Under the umbrella project The Scottish Access Collaborative, the specialty group and the DHI team will work together to unpick current breast surgery services and make recommendations for service innovations based on the findings and insights gathered over the coming months.

The aim of the Scottish Access Collaborative is to sustainably improve waiting times for patients waiting for non-emergency procedures. The program is guided by its six founding principles which foreground patient experience, clinical benefit, and transparent services. The six principles can be seen here.

The DHI was established as a collaboration between the University of Strathclyde and the Glasgow School of Art and is part of the Scottish Funding Council’s Innovation Centre Programme. It is part funded by Scottish Government. DHI support innovation between academia, the public and third sectors and businesses in the area of health and care.

The DHI was commissioned by Scottish Government to design workshops for the Scottish Access Collaborative clinical specialty-led programme. These workshops involve a range of clinical staff from primary and secondary care, health managers, patients and third sector organizations undertaking a cycle of design-led workshops.

In this first workshop, the aim was to map out the common symptoms and conditions breast surgery deal with currently as part of their non-acute out-patient service, and prioritize what issues the group want to focus on in the next two workshops.

Common Symptoms: Why focus in this?

During a morning of discussion around common symptoms and opportunities for improvements, the group focused in on a number of areas for focus for the next two workshops.

To help prioritize the aims for the next two workshops, it was useful to reflect on each common symptom and ask ‘why’ this would be a good area to focus on.

• Lump: Lump is the most common symptom among urgent referrals but the term is not strictly defined. Most breast cancers present as a lump, and there is a straight forward pathway for following this up. However, within ‘lump’ referrals, many do not have cancer, there is an opportunity to adapt triage to reassure these patients. The age of the patient is important with this symptom, women under 30 hardly ever have cancer but are often the most anxious and currently can make up a large number of referrals. There is an opportunity to establish a different type of pathway or service (non-urgent, two-stop) which can take such patients seriously and reassure them after an examination rather than unnecessarily imaging. Patients also often hear mixed or worrying messages about breast cancer on social media, and there is an opportunity to change something here, before people even go to their GP.
• Pain: Pain or tenderness is the second most common symptoms in referrals. For GPs and primary care this symptom is the most common they see, and goes across all ages. Most of the time, pain will not need to be seen in secondary care. However, it has been highlighted as symptom for breast cancer by charities and magazines for years, creating unnecessary worry and expectations. Mixed or even contradictory messages for patients are a wider problem, and there is a need to coordinate information. Many patients and doctors also struggle to distinguish between breast pain and chest wall pain, and it would be useful to provide more education. There is significant variation in practice when it comes to referrals and imaging across regions despite clear guidance. There is an opportunity to establish a different type of pathway or service (non-urgent, two-stop) which can take such patients seriously and reassure them after an examination rather than unnecessarily imaging.
• Nipple Retraction: Patients with nipple retraction only need to be seen in secondary care if this is new and permanent. The guidelines are already clear on this, but often not followed. Many referrals are categorised as urgent despite no signs of cancer. ANPs see a large number of acute patients and are more likely to urgent refer to manage risk. Risk management by ANPs is true for the majority of symptoms, not just for nipple retraction.
• Gynecomastia: The percentage of referrals due to a lump in a man varies across the country but may be as high as 5%. Often referrals are unnecessarily referred as urgent causing issues with performance indicators and absorb a significant amount of resource throughout the pathway. When referred for imaging these patients increase waiting times for patients who are more likely to have cancer. There is variation referral practice and diagnostic testing nationally.
• Worry: These referrals usually include funny feelings or indentation especially in young people. Such referrals make up a substantial proportion and have been growing. Locums who fill in for missing GPs often find it harder to reassure and are known to refer quicker. Some cannot directly refer or have their referrals vetted by the GP like registrars, but this is not always possible and takes a lot of time and resource. Mixed messages or wrong information are also a particular issue, especially campaigns that advocate not taking no for an answer. There is an opportunity to identify such patients early and provide appropriate reassurance within a non-urgent service rather than unnecessary investigation which often reinforces worry.
• Issues with implants: Symptoms from implants after cosmetic surgery are quite small group but are growing with the increasing numbers of people having implants. They often also include a lump or pain. The information that patients get from the private sector re what to expect after the surgery and over subsequent years is varied. Sometimes there is lack of documentation about the implant that has been inserted.
• Previous breast cancer: Patients who have previously had breast cancer are often seen in a one-stop clinic designed for first time patients. This is only appropriate when there is a new lump. Otherwise there is an opportunity to vet and see them in a more suitable way.

Cross Cutting Issues

Issues for general surgery that cut across the majority of symptoms include:

• ANPs see a large number of acute patients and are more likely to urgent refer to manage risk.
• Locums often find it harder to reassure and are known to refer quicker

Next

The next steps for breast surgery will be to dig deeper into the issues and opportunities for the identified prioritised areas and highlight any recommendations for service improvements in line with the Access Collaborative principles. This will take place over two further design workshops facilitated by the DHI team. While the Access Collaborative aims to develop new ways of working for NHS services, there is also recognition that there are national work programs already underway as well as existing innovations in individual boards and hospitals. Over the coming months the DHI team will also work with the breast surgery group to promote relevant national initiatives and share examples of best practice through this blog.

If you would like to know more about this work or would like to attend the next workshops, please contact the DHI project team via email 

Earlier this year (2019), the Scottish Access Collaborative Breast Surgery Specialty met again for a second design workshop. Following an initial workshop where the current state of Breast Surgery services in the NHS were mapped and common symptoms and issues discussed, the second workshop would focus on ideas for service innovation and improvements. It began with a recap of the symptom profiles and the associated key issues for Breast Surgery identified in workshop one. We also did a quick recap of the ‘how might we’ challenges for Breast Surgery developed in workshop one. The how might we challenges serve to focus attention on a particular issue or opportunity in the NHS so the group can hone in on particular innovation opportunities. The recap was followed by group breaking away into two working teams, each taking a symptom and the associated how might we challenge, adding some detail to the key issues for each challenge, developing some ideas for service improvement, and developing action plans with steps to take the ideas forwards. One team worked on the symptom ‘pain’, and the other worked on the symptom ‘lump’.  

The following summarises the symptom profile, the issues, the challenges, the ideas and the action plans from each team.

IDEAS

For Pain….

Symptom Summary: Pain or tenderness is the second most common symptoms in referrals. There is an issue around health messaging via public sources linking it to cancer and creating unnecessary worry and expectation. Distinguishing between chest wall and breast pain is an issue, as is variation in referral and imaging practice nationally despite clear guidance.

How might we: the challenge for pain was summed up as;

• How might we increase skills and knowledge on how to differentiate between chest wall pain and breast pain, and manage this in primary care?

Ideas:

• Protocol Based Referral: this would constitute a national approach with consistent information on symptoms. The aim would be a change to SCI Gateway to include standardized information on symptom, plus management advice for primary care. The outcome would be a more streamlined service benefiting the patients who do need to be seen. The impact of change would be a reduction in referrals to one stop clinics and a reduction in unnecessary imaging. Ultimately this would reflect in a shortening of waiting times. The change would need to consider ‘safety nets’ for example when symptoms change. Potential negative effects could be unhappy patients, a failure to reassure and a failure to identify incidental cancers.
• Generic e-mail Query Inbox: this would be a protocol based referral guidance that would provide material on the patient record (rather than just on email). The material would be based on a review of what is already available and made available across all health boards.
• Low Risk Clinic: while this idea was born from the discussion around pain, it could well apply to skin legions and nipple inversion when imaging may not be needed. The current gold standard is for a one stop clinic, but there are increasing capacity issues. The aim is for a non-one-stop clinic that uses ultrasound and not mammograms (in line with guidelines) and does not need a full team including radiology. This would result in less demand on one-stop clinics for breast pain and eliminate the exposure to radiation for many patients. Potential negative effects of introducing a low risk clinic are that it may result in more visits for patients, staff burn out could be an issue, and more intensity in one stop clinics.
• GP and Patient Education: this refers to national, standardized, good quality, patient information both online and offline. A consistent quality set of public health information could reduce the patient anxiety, reduce unnecessary appointments, and reduce pressure on GPs. Any time saved could be allocated for protected learning. A negative effect could be that we avoid the mention of ‘cancer’.
• Return Referrals Consistency: this idea takes on board the concept of enhancing vetting practice. It would establish standard letters to return advice to GPs with referral returns including links to guidelines. The return should inform patients of the reasons for returns including for example the risks of scans. The potential impact of enhancing the referral returns would be a reduction in expectation for mammograms and a reduction in clinical demand. Any change in vetting practice will need job planning and consistency. 

For Lump….

Symptom Summary: Lump is the most common symptom among urgent referrals but the term is not strictly defined. There are issues around non-clinical messaging regarding breast cancer that leads to high anxiety. Education is an issue, as well as pathways that deal with benign lumps seriously but without unnecessary imaging.

How might we: the challenges for lump were summed up as;

• How might we define a lump better? Is it discreet? Is it asymmetrical? What is its size? Is it a skin legion?
• How might reduce referrals with ‘lumpiness’

Ideas:

• Referral reduction: this could be done in three areas. Firstly, education could be improved for GPs, ANPs and patients using online resources, standard Ref Help, and standard information for patients. Patients could be empowered with better patient information through NHS inform avoiding cancer related sites. Also, patients could be supported to complete their own two or three-week review rather than needing a second GP appointment. Thirdly, there could be a single referral process within the current guidelines. This would include better definition of lumps, a change in SCI referral forms to reflect referral guidelines with added drop down menu options. The potential impact of these changes would be a reduction in referrals, and less anxious but more empowered patients. This would reflect in shorter waiting times for clinics, reduction in referrals, and more ‘hits’ for NHS inform. The negative effects could be some repeat visits to the GP and more time needed by the GP to make a referral.

ACTION PLANS

For Pain…

The recommended next steps would be:

• Clinicians to devise protocol of what needs to be known from the referral
• GPs / referrers to use and refer to guidelines, advice and protocol systems
• IT to switch on SCI gateway advice only 
• Better public health information with ore clinician input on ‘detect cancer early’ and advertising.

This will need:

• Money for sessions
• IT vetting across all health boards
• Better UX design

Specific actions include:

• Adapt IT systems to enable enhanced vetting based on protocol document with ability to send back information
• Develop information pack for management in primary care
• Develop automatic template letter (for GP and patient)

The challenges to this will be:

• Budgets
• Job planning (it is easier to see people that vet)
• IT is understaffed
• IT systems do not ‘talk’ to each other

The outcomes of this could be:

• Reduction in referrals
• Reassured patients
• Reduced waiting times

For Lumps….

The recommended next steps to improve education would be:

• Map current education resources and assets
• Mapper head of population referral rates per GP practice
• Better explain what a ‘discrete’ lump is

This will take:

• Time and resources for those involved (GPs, ANPs, breast consultants, ICT, patients, charities)

Specific actions include:

• Developing guidelines and information
• Develop information ‘leaflets’
• All SCI gateway letters to reflect referral guidelines (across Scotland)

The challenges could include:

• Time to develop educational materials
• Time to attend educational training
• Secondary care consensus
• Requirement to formal change guidelines (if this is required)

The potential outcomes could be:

• Access to one-stop easily accessible guidelines
• Printable leaflets from guidelines
• Online training package for GPs / ANPs
• Easily accessible GP practice / health board level data

The recommended next steps to empower patients would be:

• Change expectations of urgent referral to breast clinic, currently patients have unmet and unrealistic expectations through ill information, raising anxiety
• Create Ref Help Scotland wide that gives consistent advice across boards

The specific actions could be:

• Develop new leaflets without the word cancer, use for example ‘benign breast care’ instead
• Enhance NHS inform

The barriers to achieving this could be:

• Time to do this
• The IT infrastructure and resource
• The patient mindset
• Patient internet access

The recommended next steps to a simplified referral process with current guidelines would be:

• Develop SCI Gateway to look the same in all regions
• Include local GPs, e-health leads, and IT developers

The specific actions could be:

• Review existing guidelines
• Map out ‘who is doing what’
• Gain consensus about processes

The barriers to achieving this could be

• Sharing information

NEXT STEPS

The next step will be to re-visit the remaining symptoms and to develop new how might we statements, develop more ideas to address the challenges, and develop the associated action plans. All the agreed actions will be documented as recommendation in the Breast Surgery report to be published via this site.