Is anyne else experiencing renewed problems with continence services?

[RogerMelly]

In the last six months it has become so much more difficult to even obtain them in the first place but now we have been limited to 2 pads per day for a doubly incontinent 12 year old. I just wodnered if other people were having similar problems?

That is horrendous. Ds (also 12) has 5 - 3 of his daytime pads and 2 of the overnight ones.

we get 4 a day for our 5 year old but people coming into the system here now only get 3 a day. It's a disgrace. I thought the edcm/mumsnet campaign had been a success but it would seem some pcts are ignoring the guidelines completely.

e-activist.com/ea-campaign/clientcampaign.do?ea.client.id=6&ea.campaign.id=8401&ea.tracking.id=website

Is it time for people to access this link and challenge PCTs about nappy restrictions?

The above link isn;t clear, sorry but it is the link to the EDCM website where there is an email which people can send to the ir PCTs re: nappy provision and caps. I think it may also be useful for people to ask for their PCTs policy on continence products provision and then forward these to EDCM. I found that the PCT where I live still has a blanket policy but they have produced a written policy which does not (in my experience) reflect their practice! The more people requesting the policy the better, at least PCTs may start to think about their policies and responsibilities?

The above post should of course refer to policy on incontinence products not continence products.........long day today!!

I am working with others to lobby the DoH to look not only at the provision of continence products for children but also about the actual service they receive - in terms of assessment and support from a specialist paediatric continence promotion service - which is lacking in many areas. If any of you feel you are not getting a good service (either in provision of products or advice/info/support and are happy for your concerns to be passed on (anonymously if required) then please email me at [email protected] :-)

To be fair I have had a good experience with the actual continence nurse who covers my childs special school and she has been helpful, what i don't think was helpful was the changing of provision and that not being explained properly to parents. I was told clearly I could have nappies/slips or pull up pants and that would be 5 per day but they then changed the provision without telling the parents/carers that the pull ups cost twice as much so the provision would be reduced accordingly and in our case we get 2.4 (not sur ehow helpful the 0.4 is) pull ups. I was sent a generic letter stating that I would receive so many packs every 12 weeks and did I agree to this and stupidly I signed it without getting a calculator out, because I just trusted them. I am now in the position where I have a child who is begining to toilet train and has the independance of being able to pull up and down her own product but because of restrictions within the PCTs policy it means we will be forced back into nappies as our financial situation means we cannot top up supply ourselves, though have been having to:(

The other changes in the system require us to activate our own orders but this can only be done 7 days exactly in advance of the next order. If you phone up any earlier they give you a date but don't activate the delivery and I have waited in twice now for an unactivated delivery and it just seems bloody ridiculous when I, like many other carers, have limited time and life is often like a juggling act!

Hi RogerMelly - most PCT's also have a range of shaped pads that are as absorbent as a nappy and the same overall shape but have no side fastenings and are worn with stretchy pants - so infact act very much like a pull up but at a fraction of the price so you should not get a reduced supply. There are a range of shapes and sizes of the pads so ask your nurse to get some samples for you to try. Don't be forced into using nappies! There are also available washable absorbent pull ups (trainer pants) via the NHS and overall are cheaper to supply than nappies (so PCT's cannot fob you off re cost) . If your little girl is ready for toilet training then they may be a good option - there is no reason why you cannot get a mixed supply eg nappy for night time and shaped disposable pads /washable absorbent pants for the day :-)

They have told me they will not do a mixed supply as I asked, they stated they were not a county that did or was ever going to do a mixed supply

I will ring the continence nurse again when my daughter goes back to school and discuss other options with her but the service seemed really rigid. I had seen the washable pant in my local chemist actually and thought about buying her a few pairs as they were only £4 and the pad inserts were £4 for 20. What we are supplied isn't even absorbant for night time use and I have to strip the bed every single day and wash it because she soaks right through even if I wake her and change her just before bed.

HI pottynersey,

I shall email you my complaints to my local PCT re incontinence products and shoddy assessment. I am due to meet with managers soon, been there done that before and am not expecting anything other than to be patronised and patted, then for there to be further delay. I am just wanting to evidence I am willing to talk to them.

There are a number of documents which make clear recomendations re provision of continence services for children including Good Practice in Continence Services, The National Service Framework for Children (Children's nsf), Benchmarking in action - good practice in paediatric continence services. A bulletin was sent to all PCT's last year reminding them of the need to ensure children's supply of continence products was not 'rationed' the bulletin can be viewed at www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_118805.pdf
Good luck!

Do they get round the 'rationing' argument by saying that some products are not rationed though and only pull ups are?

I think the problem is that 'pull ups' are at least twice the price of nappies but less absorbent - so from a continence service point of view they are not an effective product. Most continence services dont supply them routinely and those that do only in limited numbers - they are not as absorbent as a nappy as they are really designed for children who are almost toilet trained who have 'accidents' (rather than empty their bladder completely) and as a result would be absorbent enough to last most of the day - so that is why most trusts will only supply 2 or 3 a day. the problem with pullups as well is that they are not very practical for school age children (particularly if they are wearing tights/long trousers/boots etc) as to change them you have to strip the child completely below the waist to get a new pair on - which takes time and is not as easy and quick as changing a nappy or pad when you only have to pull their pants down to their knees. That said there should be some flexibility in the system so there is some element of choice