Suffolk and North East Essex Long Covid and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME&CFS) Combined Service

Description

This service covers suspected and newly diagnosed myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) patients and long covid adult patients aged 18 and over, including children and young people transitioning into this adult specialist service from diagnosis, who are with a Registered GP within Suffolk and North East Essex Integrated Care System (SNEE ICS). The service also includes a proportion of severely affected up to 25% of the ME&CFS population already diagnosed, who may require additional support by the specialist service in collaboration with primary care and community services. Key aims of the service are to provide early ME&CFS and/or Long Covid diagnosis for patients across SNEE ICS with a personalised care and support plan for ongoing management and signposting to appropriate services. The service will also play an important role in supporting those who are severely affected people with ME&CFS and/or Long Covid, including supporting children and young people with a diagnosis of Long Covid and/or ME&CFS transitioning into this adult service with the intention to relieve pressure on acute and primary care services. Lot 1: Suffolk and North East Essex are currently assessing the market for potential providers of this service to inform future procurement decisions. To realise the anticipated synergies the provider will be required to deliver the entirety of the specification. Any potential providers must be aware of the need to mobilise quickly for a speedy implementation and that they must have appropriate resources already in place to support this. The specification is highlighted below but a full copy of the draft specification can be provided upon request by emailing procurement@snee.nhs.uk. The Provider will deliver this service by: • Providing a specialist integrated health service includes, but is not limited to an activity management and pacing programme to patients who have ME&CFS and/or Long Covid and have been referred to the service in accordance with the referral criteria. • Recognising that people with ME&CFS and/or Long Covid may have experienced prejudice and disbelief and could feel stigmatised by people (including family, friends, health and social care professionals, and teachers) who do not understand their illness. Consider the impact this may have on an adult with ME&CFS and that people with ME&CFS may have lost trust in health and social care services and be hesitant about involving them. https://www.nice.org.uk/guidance/ng206/chapter/recommendations#principles-of-care-for-people-with-mecfs • Understanding that ME&CFS is a multisystem medical condition and patients may experience multiple symptoms, which results in overall symptom burden which has a significant impact on activities of daily living and quality of life. • Understanding some people with Long Covid in SNEE have told us that they also have also experienced prejudice, disbelief and stigma, and may have lost trust in health and social care services as a result. • The MDT clinical specialist approach to confirm diagnosis of ME&CFS and/or Long Covid, the MDT will include a GP with special interest and/or Consultant in ME&CFS and Long Covid . • The MDT to make recommendations to the patient's GP for drug treatments for symptom management, onward referral to specialist services e.g. Rheumatology, Cardiology, Immunology, Gastroenterology, Respiratory, Dietetics, sleep clinic, mental health services and chronic pain service. • Recognising the specific needs for the severely affected living with ME&CFS and/or Long Covid detailed in their individualised care and support plan which should be developed in partnership with each patient and could include; risk assessment, reasonable adjustments and to work with the community provision in an integrated way by providing advice and guidance. • Virtual offer where appropriate in consultation with the patient, along side face to face if appropriate including in their own home. • Assessment of patients significant impairments, sensitivities and specific needs if admitted into hospital and recorded in the care and support plan. (hospital passport) • Supporting patients in acquiring or re-acquiring skills and strategies through which the impact of their symptoms may be minimised, and function optimised in activities of daily living • Providing signposting to wellbeing services and ME&CFS and Long Covid specific counselling to help with the impact of symptoms. • Listening to the patients' main concerns and acknowledging the reality of living with ME&CFS or Long Covid will contribute to their overall wellbeing, which will be captured in their care and support plan. • Providing support for reasonable adjustments for patients to remain in work or education if their symptoms allow • Supporting possible leisure activities particularly if employment is not an option • Supporting ME&CFS and Long Covid patients with welfare benefit applications which includes medical evidence that meets the requirements according to the DWP descriptors. • Recognising and addressing the needs of all patients, their families, and their Carers within the context of their care and support plan. • To ensure that patients, their families and their carers using the Service shall know how to access personal health budgets which they may be entitled to and will signpost as necessary to the appropriate service. • Promoting and facilitating a peer support network for patients with ME&CFS and Long Covid • Developing self-management education information where ME&CFS and/or Long Covid is first suspected in primary care. • Requiring a comprehensive interdisciplinary health and social care approach with expert skills, which explores all areas of difficulty, including social, family, carers support, safeguarding and facilitating wellbeing. • Requiring support with activity management and pacing of a specialist nature, which is outside the scope of the generalist services provided by other acute or community care providers. • Providing Care Navigators to support patients through the care pathway and facilitating communications between health and social care professionals. • Considering any relevant innovations to support the self management of ME& CFS and/or Long Covid. Link in with charities that support those living with these conditions for example; The ME Association • Offering outreach and training to secondary care providers across the system, to support care plans for those patients who have been admitted with severe ME&CFS. • Supporting secondary care providers to develop standard operating procedures to ensure robust care for people who are admitted with a diagnosis of severe ME&CFS • Contacting all patients who have been admitted to hospital with a diagnosis of severe ME&CFS to review current personalized care plans • Ensuring those with lived experience have an ongoing involvement in the development of the service. The closing date for this opportunity is 22nd November 2024. Any interested providers should email procurement@snee.nhs.uk Please note that this is not a call for competition at this time. Additional information: This is a Provider Selection Regime (PSR) intended approach notice. The awarding of this contract is subject to the Health Care Services (Provider Selection Regime) Regulations 2023. For the avoidance of doubt, the provisions of the Public Contracts Regulations 2015 do not apply to this award.