Data provided by Information Services Division (ISD) indicates that there are over 500 new people (above the national average) diagnosed with cancer every year in Midlothian. Information received through the Quality and Outcomes Framework (QOF) in March 2014 indicates that there were 2,140 patients with cancer on local GP registers. Given the wider impact of the illness on patients’ families, a significant proportion of the Midlothian population – perhaps as many as 12/15% - are directly affected by cancer.

 

The aims of the Midlothian Living Well After Treatment programme are to:

 

• Conduct holistic needs assessments (HNA) with people living with cancer and create tailored care plans based on each individual’s foremost concerns.
• Enable people to access services through effective signposting and the provision of clear information.
• Increase access to physical activity and healthy eating advice.
• Increase opportunities for people to manage their lives more effectively through lifestyle management courses, employment and benefits advice.

 

Longer term, the objective is to develop a much more informed understanding of the needs of local people and how these would best be addressed through analyses of needs assessments and the evaluation of the impact of this project.

 

We have developed one of the largest TCAT public involvement groups in Scotland. This allows patients, carers and family members the opportunity to be heavily involved in shaping the way cancer services are developed in Midlothian. Furthermore, two members of this group provide representation on the project’s steering group, helping to ensure key actions are carried out.

 

One of the key objectives of the Midlothian Health and Social Care Partnership is addressing health inequalities and providing much stronger and more person-centred support to people with long term conditions. This strategic approach of the new partnership includes greater emphasis on promotion of healthy lifestyles and enabling people to self-manage and gain support from both their peers and their wider communities. The Midlothian TCAT project aims to be consistent with these priorities and ways of working. One of the key activities surrounding this is the proposed plan to pilot the use of a health and wellbeing bus in partnership with the Midlothian libraries service. This will allow the project to target harder to reach areas experiencing greater deprivation.

During the design of this initiative, there has been engagement and consultation with local people living with cancer. Through effective partnerships with Midlothian Active Choices and the Midlothian Macmillan Welfare Rights Service, we have been able to gather the views and ideas of people who have experienced the cancer journey first-hand. They have told us about the difficulties they face following discharge from treatment, highlighting a sense of isolation in seeking to adjust to the effects of the illness and their treatment. Furthermore, they have told us what services/support they would have found helpful and these have been directly inserted into the project plan.

 

As a result of this new project:

 

• We have created a central point of contact (Macmillan room) within Lasswade Library. People affected by cancer (PABC) accessing this service have a Holistic Needs Assessment (HNA) and tailored care plan created based on the concerns they have highlighted.
• People can access Macmillan information and support tools within a local venue at a suitable time to them without necessarily having to make appointments.
• As well as offering 1 on 1 holistic needs appointments, drop in clinics have been established which are available within the Lasswade centre. Specialists in differing areas from exercise and nutrition to health and wellbeing, benefits and employment support are available on a monthly basis to provide guidance and advice.
• An occupational therapist dedicates one day per week to working with individuals for this project, and can provide home visits to those unable to make it into the library.

 

Although in its infancy, early evaluation results have been encouraging, with participants rating their confidence in managing their condition by themselves (8 weeks after their first appointment) as 8.7 out of 10. In addition, participants have rated the support received from the project as a whole as 10/10 to date.

We have recognised that although people have been benefiting from attending this service, we aren’t reaching everyone in Midlothian who has been affected by cancer. In order to overcome this, we have organised meetings with other national TCAT projects, and attended learn and share events to compare best practice.

 

As a result, it has become apparent how valuable the input of primary care is to this service’s success and making sure people know that support is available. Moreover, we are scheduling time to attend Practice nurses and GP Reps forums to profile what is on offer and look at effective strategies for informing residents in Midlothian who have gone through cancer treatment. It has been recognised that the project currently operates as an ‘opt in’ service. In order to be more inclusive, a more formal route needs to be developed to ensure equality.

 

Feedback from service users and discussion during steering group meetings has informed us of the need to have this support available in other areas of Midlothian. Consequently, we have recently acquired a longstanding booking within the Community hospital. We hope this will help bridge the gap between hospital care and community support. In addition, we have begun creating information points in other local libraries so people can access relevant up to date Macmillan support materials.

 

The Midlothian patient advisory group has been instrumental in the development and improvement of this project. They reviewed and recommended changes to both the project and communication plan – allowing us to focus our efforts on the most pertinent areas to people in Midlothian.