Hospice criteria

Hello Indabella302a70

My name is Adele and I’m one of the Cancer Information Nurses on the Macmillan Support Line.  Welcome to our online community and thanks for posting your question.

I am so sorry to hear about everything that is happening with your dad and that you feel unsupported at this time.  It can be very worrying when someone has a seizure and I can completely understand why you are keen to have more support at this time.

It can be difficult to be told someone doesn’t ‘qualify’ for hospice admission when you are struggling. It’s important you know they are getting the best care. Across the country different hospices have different criteria in regard to who they support. 

However, as your dad’s condition is changing, and you have concerns about his well being we would always suggest that you have a further conversation with his team.  In the first instance this may be hospice nurse that came to visit him.  However, it is also appropriate to have a further conversation with the GP, or district nursing team, if you feel his symptoms are changing, or if you think you and your mum would benefit from more help with his care.

When people are at home there is a variety of health care workers who can help with his needs.  The GP is the primary care giver and is often the one to advise on symptom control.  They work alongside the district nurses, who provide nursing care as needed.  If he requires help with things like washing or moving, or if you need further equipment in the home, this is provided by the adult social care team.  If he does not have a package of care at this time, or if his care needs have changed, it is worth contacting the council to ask for a care needs assessment.  Details of how to contact your local adult social care team can be found here.

The local council can also conduct a carer’s assessment to see if you and your mum need more support.  It can be difficult looking after someone with cancer, and it is important to tell people what is happening and the impact it is having on you both.

The specialist palliative care team are often based at the local hospice and work alongside your district nurse and GP to provide symptom control advice, along with emotional support.  I wonder if the doctor and the nurse who visited your dad were part of this team.  They are sometimes referred to as the ‘Macmillan team’, however, they are separate to Macmillan the charity.  Some organisations have also received funding from Macmillan and may therefore use the word ‘Macmillan’ in their name.  We have more information about ‘Macmillan Nurses’ on our website.

If you have concerns about the care and support your dad is receiving, we always suggest that you contact his healthcare team to discuss what is happening.  Sometimes talking through your concerns with those involved can make a big difference.  If you want to escalate your concerns, they should also have a complaints procedure on their website.

We often find we can help more by exploring these questions over the phone. If this is something you think would help, then please don’t hesitate to get in touch via our support line on 0808 808 0000. We are available 7 days a week, 8am-8pm.

I hope this information is useful. Please don’t hesitate to get back in contact by email, webchat or phone, if you need further information or support.

Best wishes,

Adele

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), send us an email or contact us through webchat.

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