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Tracheostomy trained carers

Walkers6f967f
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We are struggling to find tracheostomy trained carers to offer some respite for us. My partner has terminal head and neck cancer and relies on a tracheostomy to breathe. At the moment the both of us are unable to get a restful night's sleep as I will have to help him to change the cannula and help with deep suction if needed. 

Not sure how we are going to manage over the next few months as his condition deteriorates. I feel that if I can just get some sleep it would help us both in getting to all his hospital appointments. 

Do you have any advice on care organisations that have tracheostomy trained staff that might be able to provide care over night? Or any other ideas for respite- we are willing to try anything. 

Thank you

  • Hi Walkers6f967f,

    Thank you for getting in touch with us and welcome to our online community.  My name is Adrienne and I’m one of the Cancer Information Nurse Specialists at Macmillan.   

    I see that you’re a member of our head and neck cancer forum.  I hope you are finding it a helpful and supportive environment.

    I’m so sorry to hear how little sleep both you and your partner are getting.  It’s really important to let your partner’s hospital team/clinical nurse specialist or GP know how much you are struggling.  They can request a complex needs assessment from social services and this can be done as a matter of urgency. 

    If your partner has a district nurse, you could speak to them about what services are available to you.  Marie Curie offer an overnight nursing service for a set number of hours per week.  If this is available in your area, the district nurse may be able to refer your partner for this service. 

    Some nursing homes can provide temporary respite care for patients with a tracheostomy, no matter the age of the person, and this can be organised by your local social services.  You can call them yourself or as I mentioned above, speak to your partner’s hospital team or GP and they can do the referral for you.

    If your partner has a palliative care team, it would be helpful to get in touch with them to ask for some help and guidance around respite in your area.  Some hospice’s will offer temporary respite, but not all, so their local knowledge of services can be invaluable.

    Another option would be to find private carers yourself, that deal with complex needs such as tracheostomy care.  This can be costly but you may be entitled to funding for this.  Again, this would be through local council funding so please reach out to social services, your partner’s GP, hospital team, district nurse or palliative care team to discuss things further and hopefully get the support that you both need.

    I hope this information is helpful and you get some support and respite soon.

    Take care and best wishes,

    Adrienne

    Cancer Information Nurse Specialist 

    You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or email us. 

    Ref:  AMc/AP

  • in reply to Adrienne - Macmillan

    Dear Adrienne,

    thank you so much. Honestly it is so helpful to get this advice. I really was t sure where to turn to.

    thank you!

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