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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. 

For health professionals: Teenage and Young Adult Cancer Care

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. 

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 19th 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 paediatric oncology 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.

Age criteria for referral

 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:

Age And Aspects Of Care ....

 

The implications of this decision for the service has been that 

  • all young people newly diagnosed with cancer from the 16th birthday to before the 25th birthday must be referred to the TYA MDaT (Multi-disciplinary advisory Team) whether or not they are under paediatric or adult site specific cancer care.
  • all children and young people newly diagnosed with cancer before the 16th birthday should be referred to the paediatric oncology/haematology service.
  • young people newly diagnosed with cancer from the 16th birthday and before 18th birthday may be referred either to paediatric or adult cancer services. Referral to paediatric services at this age may still be appropriate in relation to the nature of the diagnosis, the preference of the young person and his/her family; and his/her developmental status. Before making this decision, however, due consideration should be given to how shared care can be delivered, the need for a transition plan, and the possibility of requiring subsequent transfer to adult services.
  • young people newly diagnosed with cancer from the 18th birthday should be referred to adult site specific cancer services.
  • all children and young people who were originally diagnosed with cancer prior to the 16th birthday but who transit their 16th birthday whilst still on treatment, should be referred to the TYA MDaT whether or not they remain under paediatric care.

 

Contact us

Teenage and Young Adult Team Email: TYAMDaT@UHBristol.nhs.uk

TYA team office: 0117 3422713

Where ever treatment is offered all patients are offered access to a dedicated TYA Nurse Specialist (NHS funded and adopted by Teenage Cancer Trust) and a TYA Lead Clinician in each of the designated hospitals. Please contact the local TYA Specialist Nurse for further advice on choice of place of treatment and support available

  • Megan Wilsher - TYA Specialist Nurse, Gloucester and Cheltenham mob 0783344128
  • Jacqueline Hulbert - TYA Specialist Nurse, UHBristol, North Bristol and RUH Bath mob 07827896110
  • Claire Lewis Norman - TYA Specialist Nurse, UHBristol, North Bristol and RUH Bath mob 07771 996449
  • Lorraine Beddard - TYA Specialist Nurse, Exeter & North Devon  mob 07717325391
  • Nicola Neal - TYA Specialist Nurse, Taunton & Somerset mob 07760551214
  • Kerry McKay - TYA Specialist Nurse, Plymouth & South Devon mob 07769282561
  • Lucy Figg - TYA Specialist Nurse, Plymouth & South Devon mob 07769282561
  • Hannah Heayn - TYA Specialist Nurse, Cornwall mob 07879486675

 

Facilities

There are two areas for the care of young people with cancer in the Principal Treatment Centre at UH Bristol: Ward 35, in the Bristol Royal Hospital for Children, and Area 61, a newly built TYA Unit for young people in the Bristol Haematology and Oncology Centre (BHOC).

Ward 35, cares for young people aged 11-16, with four beds specifically supporting young people with cancer. There is active collaboration between Ward 35 and Area 61.

Area 61 was funded and developed in partnership with the Teenage Cancer Trust. The Unit opened in 2014 and provides care, treatment and consultation for young people with cancer aged from 16 to 24. It is built over two floors with one floor dedicated to in-patients featuring five en-suite rooms; a social area equipped with gaming and entertainment equipment and a kitchen and dining space; quiet room; treatment room; and a more recently planned wellbeing room. The other floor is for day patients featuring three treatment 'pods'; three consulting rooms; a procedure room; social space; waiting area and a staff office.

Age specific facilities have been/are being established in many of the designated network hospitals, with Teenage Cancer Trust support.

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:

haematology and oncology diagram 

First, we ask that you register the patient with us by completing via the South West Integrated MDT Management System (IAM Portal SWIMMS [CJ1] ) for online registration or via a registration form [CJ2] emailing it to the MDaT Coordinator at tyamdat@UHBristol.nhs.uk. Please call 0117 342 7654 if you need any help.

We will log the registration at the next available MDaT so that the wider team are aware of the patient and will suggest a date for a full discussion, usually within 6 weeks. The coordinator will liaise with you to obtain further information about the patient and to confirm the best date and time for you and your colleagues to join the MDaT for the full discussion.

 

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 suzie.holmes@clicsargent.org.uk