For health professionals

All new patients should be given an information leaflet by clinical teams when introducing a young person (16-24yrs) to the regional TYA service. 

 

University Hospitals Bristol NHS Foundation Trust (working in partnership with North Bristol NHS Trust) has been the designated Principal Treatment Centre (PTC) for Teenagers and Young Adults (TYA) with cancer in the South West (SW) of England, a population of almost 5 million, since 2011. The PTC oversees the delivery of specialist malignant haematology and oncology care along with the provision of emotional, social and practical support to young people diagnosed with cancer, low grade brain tumours and non-malignant conditions requiring 'cancer-type' therapies such as Haemopoietic Stem Cell Transplantation (HSCT) aged between 16 and 24 years. 

The NHS England Standard Contract for TYA with cancer (B17/S/a) reflects previously published national guidance(NICE IOG 2005) and states that young people aged 16-18 years (i.e. to 19^th birthday) should be referred to a TYA PTC for treatment in age appropriate facilities and that young adults aged between 19 and 24 (i.e. before 25th birthday) should be offered the opportunity to receive treatment at a PTC in age appropriate facilities.  However, when the TYA service was first commissioned in the SW, a devolved network model of care was agreed with the Specialised Commissioners. 

For geographical reasons, and in line with a long standing and well-established regional 'shared care' network in childhood cancer in the same region, it was agreed that a regional network for TYA care would be established linking the PTC in Bristol with 6 designated hospitals offering TYA services across the SW. They are: 

1. Gloucestershire NHS Foundation NHS Trust
2. Royal United Hospitals Bath NHS Foundation Trust
3. Taunton & Somerset NHS Foundation Trust
4. Royal Devon & Exeter NHS Foundation Trust
5. Plymouth Hospitals NHS Trust
6. Royal Cornwall Hospitals NHS Trust

The rationale for this decision was to ensure that all young people were able, whenever possible and appropriate, to access treatment locally.

Diagnosis and age criteria for referral 

TYA cancer is rare, accounting for less than 1% of cancer in all ages. The spectrum of cancer types in this age group is also distinct from those seen in both children and adults. However, tumour types more commonly seen in young children or older adults may occasionally also be seen in the TYA population. The most common tumour types in TYA patients are:

• Lymphomas;
• Germ cell tumours;
• Central nervous system tumours;
• Malignant melanomas;
• Acute leukaemias; and
• Sarcomas.

The service can also support TYAs diagnosed with low-grade brain tumours or non-malignant conditions requiring 'cancer-type' therapies such as Haemopoietic Stem Cell Transplantation (HSCT). 

A review of the lower age threshold for referral to the TYA service was conducted in collaboration with the childhood cancer service in 2016. This considered the complexity of the age interface in relation to: MDT discussion; provision of in-patient care at the PTC; provision of paediatric shared care and TYA designation across the region; the availability of age appropriate accommodation; and the provision of support from either paediatric or adult services. Variability exists in the policies about the upper age limits for paediatric care across hospitals involved in the network. 

This is illustrated below:

TYA MDaT

Why do young people with cancer need to be discussed by the TYA MDaT?

National policy (NICE Improving Outcomes Guidance 2005 and the national service specification for TYA cancer) require that all TYA patients (aged 16-24 years) are discussed both at a relevant site-specific diagnosis and treatment MDT and by the regional TYA MDT. This forms part of TYA Cancer Peer Review Measures.

We call the TYA MDT the 'MDaT' both to avoid confusion between the two MDTs involved and to emphasise its role as an advisory body. The focus of the discussion at the MDaT is to ensure that each young person's needs are discussed holistically and that the advice and resources of the TYA service are offered to add value to the care each young person receives

MDaT Process 

The TYA SW MDaT takes place as an online webex meeting and is held weekly on Wednesdays from 12:30-14:00.  The referral of new patients is managed as a twostep process.

The following diagram summarises the process:

 

 

 

 

• Patients are registered using the SWIMMS (South West Integrated MDaT Management System) system using this link: www.swimms.co.uk for  online registration or via a registration form by contacting the MDaT Coordinator at tyamdat@UHBristol.nhs.uk or by calling 0117 342 7654. A logon, password and brief user guide for SWIMMS can be obtained by calling 0117 342 7592.
  

• We log each new registration to be included at the next available MDaT so that the wider team is aware of the patient at an early stage and will suggest a date for a full discussion, usually within 4-6 weeks. The second step is undertaken by the MDaT coordinator who will liaise with you to obtain further information about the patient and confirm the best date and time for them to join the MDaT (on line or in person) for a full discussion.
  

Please note that, in order to comply with information governance requirements, all patients must be provided with information about how their personal data are handled and by whom these are to be discussed. This is achieved by issuing every patient with the TYA SW Service Offer Leaflet that includes a section explaining this. A copy of the service offer leaflet can be obtained from our website. Registration via SWIMMS requires that the referrer confirms this has taken place, and without such confirmation, the system will not allow the registration to proceed. 

At the full discussion, the chair of the MDaT (usually the TYA Lead Clinician or TYA Lead Nurse) facilitates a short presentation from the referring team around the patient's diagnosis, prognosis and treatment plan and will ask about recruitment to any available clinical trial and whether or not fertility preservation was necessary, possible or implemented.  The patient's holistic needs are then discussed, using the IAM (Integrated Assessment Map) submitted prior to the meeting to structure the conversation. If the young person has not submitted their own IAM, or one done in partnership with a healthcare professional, the key worker is asked to submit a professionally led IAM before the MDaT discussion.

The outcomes and actions from the meeting should be used to inform the patient's care plan and are emailed (via nhs.net) to the referring team by the MDaT coordinator as a pdf document which can be downloaded to electronic medical records and/or printed and filed in the patient's notes. This includes a date for review at a future TYA MDaT if this has been agreed to be appropriate. All patients are routinely reviewed at/around the end of treatment.

 

 

Note: patients should be informed that they will be discussed at the TYA MDaT. This is further explained in the TYA Service Offer leaflet given to patients

What happens at the MDaT?

We have produced a guide that provides information for you about how to join the online meeting.

The chair of the MDaT (usually the TYA Lead Clinician or TYA Lead Nurse) will facilitate a short presentation from you around the patient's diagnosis, prognosis and treatment plan and will ask about recruitment to any available clinical trial and whether or not fertility preservation was necessary, possible or implemented.  The patient's holistic needs will then be discussed, using the IAM (Integrated Assessment Map) submitted prior to the meeting to structure the conversation. 

If the young person has not submitted their own IAM, or one done in partnership with a healthcare professional, we expect the key worker to submit a professionally led IAM before the MDaT discussion using this template. 

Guidance about this is also included in the MDaT user guide.

Please contact the MDaT coordinator if you need any help (Email: tyamdat@UHBristol.nhs.uk or Phone: 0117 342 7654).

What is the " IAM"? 

As with all cancer teams, the TYA service uses a holistic approach to understand the needs of patients following a diagnosis of cancer. We have developed the IAM (Integrated Assessment Map) as a TYA specific alternative to the Macmillan eHNA or other site specific holistic needs assessments in order to better capture information important to the care and support of young people with cancer. 

The IAM looks at young people's needs in 10 domains that, in our experience, are important to TYAs and can have an effect on their resilience and adaptation to cancer.  Needs in each domain should be assessed, if possible, by the young person themselves with or without the support of a professional. Members of the TYA team, usually the local TYA Specialist Nurse, will explain the IAM to each newly diagnosed patient and provide them with the appropriate link to the IAM portal - www.tyaiam.co.uk.

Each domain is scored on a four point scale (0-3) which indicates the level of concern / need for information and support the young person has in this area. The summary of this assessment, presented visually as the 'map', is made available at the TYA MDaT to guide the discussion. We don't expect a detailed discussion on every domain but rather try to focus on areas which may warrant particular attention according to the patient's individual needs.

What happens after the meeting?

The outcomes from the meeting should be used to inform the patient's care plan and will be emailed to you by the MDaT coordinator as a pdf document which can be downloaded to electronic medical records or printed and filed in the patient's notes. This will include a date for review at a future TYA MDaT if agreed to be appropriate. We try to ensure that all patients are routinely reviewed at/around the end of treatment. 

After treatment

After completion of the initial definitive treatment, the ongoing disease surveillance and follow up of the patient is the responsibility of each Site Specific MDT; the TYA service collaborates with the Site Specific MDT to ensure that an individualised long term care plan is in place.  All patients will be offered 2 years of peer and social support from the TYA team, alongside access to specific wellbeing support identified through assessment of their wider holistic needs as the transition to supported self-management.

Patients treated by a paediatric team will transition to the SW Aftercare service for long term follow who will liaise with specialists in endocrine, cardiac, neurology as required.

CLIC Sargent TYA team referrals

All patients are entitled to support from the CLIC Sargent Young Person social work team.

Please complete the CLIC Sargent TYA team referral form  and return by email to anna.regan@clicsargent.org.uk