User participation fails again

Last year I moved from being funded by the council to being funded by the NHS. I employ the same Personal Assistants, just the funding has changed. Most people who qualify for a Personal Health Budget (PHB) like this have to meet challenging criteria needing daily health care support.  I’m a big fan of personalisation – probably why my working life was always in this field. If done right, with good information and support, it can really help people have a better quality of care and support. For many it can be life changing.

When I was told I had met the criteria I was asked if I wanted to take part in peer support or consultations about using PHBs. I’m all for participating in things to help more people use a PHB so I agreed to be a contact.

Early February I was contacted by Skills for Care to review their online information for people who employ Personal Assistants and use a health budget. For participating they would pay me £15 an hour for around two hours of ‘work’ spread out over about 3 weeks.

I immediately said I was interested.

and so followed:

  • A 14 page participation policy
  • A 3 page form to detail how I found the online information I would review (the ‘work’)
  • A 4 page payment form to complete
  • A warning that I needed to seek benefit advice as a fee would be involved.
  • If I participate I become an Advisory Group Member.
  • A note to go to the HMRC website and fill out a employee checklist for tax and NI.

On that note, considering I am in receipt of benefits because I can’t work and all I wanted to do was provide a review of their PA resources, I’m out.

How can people participate when faced with all this. It’s too much. Too exhausting. 

If I do the above I could be viewed as looking to take up employment – I’m not, I just wanted to review a website over a period and time I am able to. People on benefits can receive participation fees, as long as it’s not a long term thing that would indicate they could work.  All of the above might suggest I am working. I’m not taking a chance on that.

 

 

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No room at the Inn – well no bed to be precise.

About 9 months ago the dates for the Firework Championships were announced – so we quickly booked into the Holiday Inn, Plymouth. I’ve written a separate blog post on our holiday.

We had chosen the Holiday Inn based on personal and practical requirements. The location meant we could walk to see the fireworks, it had parking and was one of the few places to have air con (as I need to keep the air cool because of my ventilator mask which otherwise gets really hot and uncomfortable)

At the time of booking the only wheelchair accessible room available was one with a double bed.

Out of 211 rooms there are only 2 with wide doors etc and a larger bathroom for wheelchair users which is rather poor. The chances of getting a twin room in hotels with so few rooms are slim.

 

We made the wrong assumption

 

bed

 

When we have stayed at other similar places (Premier Inn, Travel Lodge and even other Holiday Inns etc) where we can only get a double bed, we have been offered a camp / folding bed or sofa bed.

I have to take my pressure relief mattresses, turning equipment that goes under the mattress etc and I use a ventilator – so sleeping in a double bed with my husband isn’t an option. However, he has to be next to me to make sure I’m ok and to help me during the night.

Just before we went I spoke to them on the phone to ask for the folding bed and was told they had a policy not to provide these. Also, if we wanted second room for a carer (which wasn’t adjoining through an internal door, so wouldn’t have been any good for us anyway) we’d have to pay for it.

 

 

Making it possible to stay for work or leisure

Hotels have to make ‘reasonable’ adjustment, under UK  equality law,  to enable disabled guests to use their services – including providing aids and equipment. I’m assuming this is why the portable bed is often provided for carers in other places.

Another example is that if a person can not use the bath they can request a bath lift at one of the major hotel chains. Another chain offers low beds that can be raised on blocks to suit different height requirements.  It can make the difference between going or not going on holiday.

Also, it’s not only holidays that are the problem,  I’ve been to many hotels in the past for business trips, attending conferences or running training events for my company – and it really made working life difficult.

Basically, affordable, portable equipment that can help a range of guests have a much better stay are one of the things they can do for customers.

An apology

Holiday Inn isn’t cheap, we didn’t want to pay double and we needed and wanted to sleep near each other. My husband didn’t want to sleep on the floor – so on principle we felt unwanted and cancelled – moving to the Future Inn.

Since then, we have had an apology from Holiday Inn after I made a complaint. The manager was very polite and wrote in detail about the facilities they do have and the training provided for staff. He also explained that they do have a policy of offering a free room for carers and will consider a portable bed.  I hope this is a real genuine consideration.

I would like them to understand that things like a portable bed would have made all the difference and is better than the other option of us taking a camp bed or my husband sleeping on the floor.

I suspect many other people are in the same boat as us (from what my friends have been saying) and I know some wheelchair users who sleep in their chairs because of the ‘bed’ problem. It’s hard finding accommodation when most hotels only make 1% of their rooms wheelchair accessible.

Access for people with mobility impairments is more than wide doors and a few grab rails – its also about giving accurate information so that people can decided where they want to spend there money. We need a higher proportion of accessible rooms to choose from – that have been designed in a way that will benefit a wider proportion of disabled guests – not just mobile wheelchair users who don’t need assistance.