We Talk Brain Tumours

I omitted to say  that the Crossroads service is free.

we phoned this website and were told we needed a mac nurse to be able to get the mac grant? and that the GP would get the Mac nurse but he has said no.. ???

Re pain management- we put an easy-to-read medication chart on the fridge door for her before we left england, as she kept getting mixed up with her medication (her tumours affects her memory) and in terrible pain and so anxious that the big seizures would return and the children would be taken.. I'm on the phone to her first thing in the morning and last thing at night to make sure that she's on top of her meds.. yes its a dreadful worry as she doesnt have a decent partner to take care of her, its just her and her small children.

First thing monday I'm getting on the phone to try to sort out the following:

1. her epilepsy drugs need to be sorted out as promised 2 weeks ago at Kings. 2. when is she seeing the TYA team, also promised at Kings a while ago. 3. can she have a social worker. 4. apply to Clic sargeant for a grant and 5. apply to Mac for a grant

I think thats all correct? a big thanks to all of you on here for this advice XXX

Susie

I was getting in terrible mess with Meds until I found that chemist will make the up in a blister pack  with each day split into 4 little bubbles with the meds that need to be taken at specific times...so you can see if you have forgotten to take. They also deliver free of charge.

Cathix

Dear Susie

Sorry to hear about your daughter and the terrible distress that this dreadful disease is bringing you. With regard to the comments you made a few posts away about the childcare issues whilst your daughter is undergoing treatment . There are a couple of things that may help-

*you could ask your daughters health visitor to undertake a CAF assessment (Common Assessment framework) which when done may identify what issues need addressing and the appropriate individual to address that need- i.e childcare. In the area where I work ,I would in this situation refer to the childrens centre where they have a childminding network co-ordinator who may facilitate (and fund) a childminder to offer respite for your daughter, they also have nursery placements funded under certain conditions.

*The childrens Centres also have family support workers who may help offer support, some areas have a team of volunteers who also help families under stress.

*Social Care (Social services) can sometimes support with care if the children reach their  'criteria' as being in need - under  section 17 and in relation to safeguarding children- the aim is that every child reaches their maximum potential- some Social Care teams have a child in need team- it prevents families from ' breaking down'

*If your daughter cannot manage the children and they need to be placed in 'care' there are Kniship orders where family members receive payment to care for the children-

*There is also Crossroads? which ? may help with a couple of hours of support for house work.  

If a CAF is done all those involved should be invited- including MAC nurse they often know of 'pots of money/funding' that may help with childcare/respite sessions

I hope this helpsif I can think of anything esle I will add. Take care and love to everyonexxx

I think it was some sort of assessment meeting we had and it was the health visitor who told us that the only help social services could give was to take the children, and we were told that they wouldnt be kept together either. She said that if she sees that rachel isnt coping she would have to inform them. This was very distressing and partly why rachels trying her best to cope and struggling as of course she doesnt want her children to go into care. The children went to a registered childminders licenced for overnight care for a week when she went in for her biopsy, paid for by a charity-run childrens centre. My son will step in for the children if / when the worse thing happens, hopefully a long long long way off, but he is recovering meningitis at the moment and been also diagnosed with fibromyalgia and still off work. 

Any idea how she goes about getting a social worker, as mentioned earlier?

Many of you have been on this journey far longer than we have but I feel I've aged several years in a couple of months. XXX

GP cant refuse to get your daughter a macmillan nurse. With her being on her own she should have been given a mac nurse from day one. Your health visitor can only give her opinion on what the social services may or may not say or do so for her to say off the top of her head the children will be split up is very wrong. Its disgraceful to be honest. Phone the nearest hospice up and they will help sort any problems out and will get a mac nurse sorted out for your daughter. Your daughter should not be left with no help if theres a chance she could fit at anytime especially with young children at home. The hospital your daughter attends should have sorted out some sort of home help, home care. Also i would allways ask for a second and even a third opinion on treatment options. All the best. Aaron.

ps, suzy. phone daughters hospital where she has her treatment. Phone the nearest hospice. Phone your daughters GP. She needs a macmillan nurse and dont let them bull you off. One of those will sort things out im sure. Good Luck. Aaron

thank you, yes that was the first thing we did, they said to ask the GP and after asking the GP 3 times we phoned Macmillan support line again and they said to report the doctor.. we've asked the GP one more time and there is now someone calling on Monday from a local hospice, but I'm not sure if they can apply for the Mac grant for her.. 

Hi Susie

The hospital can arrange for a social worker to become involved, but your daughter could ring social care herself- the whole idea of social care is to support families as much as possible in order that a breakdown in the family unit doesnt happen, the comment from the health visitor is quite 'strange' as social care, even if they remove children for whatever reason try to place children together and that would not be their first option in your daughters case as she has not done anything wrong she is just unwell at the moment which potentially could affect her caring for them. I know areas do differ but I am sure there are some options that professionals could investigate that would help your daughter whilst she is undergoing treatment.

I hope that they find some solutions xxx