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Up next, Catrin Emery talking about the road home from hospital. 🏡 What are the considerations for home vs a specialist TIV home? 🏥What equipment is needed to get home? ⏩ Weaning, progression and regression after discharge.. it doesn’t stop once home ⚠️ Risk management

Rene & Wendy from HFH Healthcare share their practice for education and training for their carers. A really aspirational model of in-house training followed by their staff spending the day with our Outreach team to see a variety of patients and learn from LTV clinicians

Rene & Wendy are also keeping the room accountable by sharing their workbooks! Fill them in as you go around the workshops this afternoon!

When working in care, it’s important to look after our own health and well-being. Dr Allie Hare shares her expertise: 😴 how can we recognise fatigue in ourselves so care is not compromised?

🪫 What’s our body & brain telling us about our internal battery? How can we re-generate it? Exercise, a good meal, a walk etc may be tiring, but may be of high value and give you energy What needs to be prioritised? What can be delegated? What can be deferred? Dr Allie Hare

As a sleep expert, Dr Allie Hare of course advocates good sleep of 7-8hours per night to avoid creating a sleep debt that needs to be paid back. We are not super human. We need breaks, rest, good sleep and healthy sleep hygiene

Lovely to see Anita Simonds speaking Royal Brompton Tracheostomy & Ventilation Outreach Royal Brompton and Harefield #tracheostomy ventilation in the community. Highlighting decision making in NMD. NMD patients are pragmatic but there are gaps in the care that we provide! We also need to provide better support for psychological issues

Day 2 has begun with Prof Anita Simonds sharing her expertise on decision making in NMD. New treatments have evolved in this group, our care now is more anticipatory vs reactive, they’re living longer, and prognosis is changing

Patient feedback from NMD patients utilising virtual consults during / post COVID.. Some thought they’d prefer it but a lot missed being seen in person, regardless of the journey required. They valued F2F consults on their health. We need to re-introduce this / offer choice

How do we manage inappropriate ceilings to care being placed on people with NMD? Encourage those in ITU etc to look beyond the condition, see the individual, understand how they live & consider their aspirations. This can be gained by talking with their LTV team. No blanket rule

DrMRamsay giving an excellent presentation on ALL the ventilation strategies for patients with MND. What, when and how? Royal Brompton Tracheostomy & Ventilation Outreach Royal Brompton and Harefield Lane Fox Respiratory Service

Next we hear from DrMRamsay on NIV and TIV in MND. We are generally comfortable offering and commencing NIV, but how do we feel about brining up the concept of TIV?

What’s our role in decision making for TIV in MND? - Don’t shy away from discussions regarding TIV - Keep a patient centred approach - Provide them with the information to make an informed choice DrMRamsay Lane Fox Respiratory Service

Fantastic to now hear from Stephen on his and his wife’s experience on living with TIV in the community. His sense of humour is something special. We look forward to hearing his talk

Stephen’s suggestions: 1. As well as an OT visiting and assessing the home for suitability of living with TIV, someone with lived experience of this should visit to provide practice advice

Stephen’s suggestions: 2. He and Polly value talking to others with lived experience. Patients / families going through similar may value having contacts like this when making their own decisions about care beyond hospital What resources do we signpost people to?

Polly, Stephen’s wife, shares her experience.. There’s no guide for how to set up an ITU at home. It’s all made up and a steep learning curve.

Polly’s top tips for home TIV: 1. Take pictures of all consumables to support easy identification and sourcing 2. Good storage with labels are key 3. Ikea trolleys to store vents, MI:E, suction etc for easy movement around the home 4. Establish your home rules early

Brilliant, informative 2 day study course on Tracheostomy Invasive Ventilation, with an incredibly inspiring talk from Stephen Deal & his wife, Polly. Thanks Royal Brompton Tracheostomy & Ventilation Outreach Debbie Field & colleagues. King's Health Partners Rebecca Wray

Unplanned hospital visits can be stressful at the best of times so this preview gives a flavour of our upcoming film to prepare HMV patients before admission. Thx to I'm Still Standing Becky D'Cruz #BTSWinter2023 #LaneFox #GSTT #SiLvaH #respisbest #RBHHomeVent #BTS #HMV #Duchenne