Fire Safety Check

When we were moving into this adapted, accessible home, the housing team asked if we wanted a fire safety check of the home. I said no at the time because we were in the kitchen of a bare walled house in a terrible state. There was graffiti on the walls upstairs, no flooring and rough potholed walls throughout.

My amazing friends and husband sorted out the decorating and then we moved in and had our housing officer call over to complete a new tenancy check. He was amazed at the difference in the property and pleased to see people here now who will look after it. Goodness knows what was going on before here!

At that appointment, he asked about a fire safety check and ensuring safe routes for me to exit the property in case of fire, so I said yes please.

Cut to five weeks down the line and the fire service were due today between 8am and 5pm.

Around midday there is a knock on the door (today we have had two carers call, a cleaner, two deliveries, shopping home delivery, kids calling for our children to go out to play, the council called out about a leaking pipe and the care team OT called too). My son had to separate the dogs from the front door and then let the man in from the fire service. He was hiding around the corner from my room in the hallway, so I asked my son to show him in. My son knows I am uncomfortable with men so he stayed with me.

Well, what a waste of time!

For a start he looked at me sat in my bed (because the second carers had just left and we had been sorting out the house together so I was tired). He asked if we had known he was coming in a gruff tone, as if we had been given a precise time for his call and therefore should have been ready for him to arrive and walk straight in. That set the tone.

He asked for a chair.... Its my bedroom, so I offered his the shower chair to sit on that was next to my bed at the time.

He took details like my name and address, date of birth and ages of the people who live here, then talked at me for about twenty minutes, reading an A4 sized list of points to cover about fire safety. I coukdnt concentrate and so most of it went straight over my head (to be fair it was the stuff you are told in primary school anyway). At one point he mentioned about not putting water on an oil pan fire and my son said 'yes, because it will go whoosh' showing a big ball of fire with his arms. The man looked at him with a disapproving look, didn't even acknowledge him and then carried on reading the list!

He asked if anyone has mobility issues.... Hmmm... You are sat on my shower wheelchair and my bedroom is downstairs, the doors are all widened and sliding and I am wearing a lifeline. What do you think Sherlock?

Then if anyone was concerned about their health? Hmmm....

If anyone was on medication... Just a pharmacy's worth of it

If anyone woukd have difficulty getting out if there was a fire..... Hmmm...

Before telling me that if there was a fire i woukd have the easiest escape route because the back door is only 3 strides away from my bed!! Really?! For real?!

So, I woukd have to sit my bed up, wait until I didn't feel dizzy, put my feet over the side of the bed using my arms, then use the transfer board to get into my wheelchair. If it is the morning then you're lucky if I can even get that far. I certainly can't open the sliding door of my bedroom when my hands don't work in the mornings, let along self propel my wheelchair. Then there is the back door to open and get out of. I am sure my three children woukd be out of the window and waiting on the flat roof of the wet room before I even got into my wheelchair!

Seriously though. This man is going into the hones of vulnerable people and asking ridiculous questions in a mechanical way. There was far too much information spoken at me and nothing left with me in writing regarding advice or safety.

He asked about smoke alarms and I said they were checked when we moved in and I knew there was one downstairs. He asked me about upstairs so I said I didn't know, I can't get up the stairs!

He then chastised me for not checking the smoke alarms regularly!! I can only just reach the top of my own head, never mind a smoke alarm matey!!

I have had a check like this carried out before, by a different fire service, and the person was personable, helpful and friendly and left advice with me. Even my son was amazed at how the man behaved. It is not good enough.

#fireservice #staffordshirefireservice #chronicpain #chronicillness #chronicfatigue #wheelchairparenting #autismparenting #adhdparenting #fibromyalgia #ME #CFS #degenerativediscdisease #IBS #healthgrief #homesafetycheck #firesafety #smokealarms #notbothered #rude

Naidex Review

This year was our first visit to Naidex. We got our free tickets as a family to attend the second day in Birmingham NEC, a place where we have always struggled with the car parking, distance to the halls and numbers of people in attendance at the exhibitions and shows held there in the past. We have never been to the autism show for these very reasons.

I was fairly well prepared this time though. I have a blue badge for parking for the first time so I knew we would be able to park in a separate area, closer to the halls than we had ever parked before, but it stated that spaces were first come first served so I was a little anxious about my husband needing to drop us all off and go park the car somewhere else, then find us amongst the stands later on. I needn’t have been concerned as there were clear signposts all the way to the disabled car park and plenty of spaces and an overflow area too. To my delight, the area was right next door to the halls too so we didn’t have any distance to walk at all, plus the parking was free. On a serious note, it did mean we could leave our coats in the car and not have to carry them around all day, leaving space for my youngest, A, to jump onto my lap when it got too overwhelming and busy for her.

At the entrance to the halls there were clear signposts to Naidex so we knew which hall to head to as there were a number of halls with different exhibitions on the day. We deliberately arrived after the opening time so there wouldn’t be a queue or rush of people and I knew there was a Starbucks there, to be used as an incentive for A too.

The people at the hall diverted us to a desk where a machine printed out sticky labels with our names on, for us to wear on a lanyard- instant hit with the children. We grabbed a show guide (essential throughout the day for the map if nothing else) and a goodie bag then headed in. The entrance area was pretty quiet as there was a gap between the stalls at this point- great for us as a first impression. After the initial toilet run we decided to head left and then wander up and down the aisles, seeing what was relevant and useful throughout the day.

On our way in, A- age 6- shocked me with ‘Mummy, noone is going to know me or G are disabled are they? Because you can’t see it’. I was so proud of her being able to articulate this and realise that other people may think differently because at her age, with her difficulties that says a lot. I was equally as proud of her and G when throughout the day they didn’t stare at anyone or even batt and eyelid at the numbers of disabled people with such varied needs. Many children (and adults) I suspect would have reacted very differently.

I was initially surprised by the sheer numbers of wheelchair users in one place. It was such a change for everyone to be on my eye-level rather than above me and looking at my husband. When we went to the stalls and exhibitors they were talking to me, not to my husband over me. I loved the day for that experience as I have really noticed that difference since needing the wheelchair. It is only young children that seem to notice me and they either stare, ask me millions of questions or get hushed and hurried on by their parents.

We were hoping to find aids there for helping me transfer safely in the home between the bed/commode/chair/wheelchair, something to help my husband get me off the floor when I fall, weighted items to help with my tremors, sensory items to help me and my children with anxiety and strengthening and perhaps other items useful for everyday living. We were disappointed to find nothing like that at all, which is perhaps testament to the costs of having an exhibition space at the show.

As a generalisation, there were lots of motability car converters and providers present, all keen to pin you down for a ‘free, no obligation home demonstration’ and lots of companies exhibiting various wheelchairs or all types. In between these were people with ‘new’ ideas for websites, apps, holidays and electric adjustable furniture for the home.

I feel mixed about the marketing of items and aids for people with disabilities. I find that the aids I need day to day are always marketed for elderly people, which instantly makes me feel terrible about myself needing them already. I am not 40 yet and all the leaflets, information and aids I have are for the elderly because of the lack of strength and stamina I have in my body. The aids for tremors are all aimed at those with Parkinson’s, who tend to be older. The commode and incontinence products are all marketed at the elderly so are not very appealing for my age group. As a simple example for you, I had an accident recently where I really could have used incontinence underwear. Even before I needed the wheelchair I was struggling intermittently with this as an ongoing issue so used sanitary towels daily. With the mobility worsening, the time it takes to get to a toilet, especially if I have fallen, has increased. I wear leggings because they are easy for me to pull up and down with one hand whilst I hold myself up. However, my leggings are black and the incontinence products are white. Why can’t they make them in black so they are more discrete? If they looked more like a pair or underwear I could wear them with far more confidence. It has also been fairly difficult for me to find suitable items to help me and I feel these should be made easier for people to find. I am very computer and internet literate and able to search around, shop online and locate items I need over time, but many are not able to do this. A very simple item I did not know existed was commode liners. When I realised I needed a commode I was devastated. I have worked in a nursing home and care home in a previous life and know exactly what is involved with caring for people who need full personal care. I do not want my husband doing this, but the thought of a stranger doing it is even worse. I still do what I can but there are many many days when my husband literally has to do everything for me. It is so embarrassing and I hate having to ask him for things or do to things for me. I constantly feel as if I am nagging him and adding to his workload. The thought of him cleaning out a commode pan for me several times a day was too much. There was no way I could live with that. I put off getting a commode for weeks as a direct result of these feelings and had many more falls than I needed to in struggling back and fore to the bathroom. Once I could avoid it no longer and the delivery day came, I found a well known online store stocked these bags containing an absorbent pad that turns to jelly when wet (a little like the inside of a nappy).

They tie closed and cover the worst smells too and I wouldn’t be without them. But why doesn’t the company who delivers the commode tell you about them? Why don’t they stock them?

Why did noone tell me that you can buy a long handled comb?

I have been finding it impossible to comb my own hair for months and been relying on my husband (who has had no hair for decades) doesn’t always have the most flattering results. Then one day whilst searching online for a lifting belt for him to help move me without hurting himself (which still hasn’t been delivered) I came across a long handled section with makeup applicators, toothbrush holder, brush and a comb. When you have your OT (occupational therapist) assessment at home why don’t they have this information? You tell them everything you are struggling with from opening drinks bottles to going to the toilet or getting out of bed and they can supply the larger items for you to hire whilst you need them, yet they don’t seem to even know about these smaller yet essential items that would easily and cheaply help so many people. I have even seen a shampoo stick online for when I can eventually get into a bathroom again I will be able to use it to partially wash my own hair with water again. I cannot wait!

So Naidex was missing all of these items and was full of the very expensive one off purchases people would make, because of course people who are disabled have £10,000 to spend on a wheelchair. Everything is so expensive and overpriced. Just because we can claim DLA (disability living allowance) or PIP (personal independence payment) does not mean we are rich. We have a lot of money we have to pay out for things that people who are not disabled don’t even have to think about. For example, the bags for my commode are around 70p each. That means it costs more for me to have a wee at home than it would at a major London train station, and one of the symptoms of one of my conditions is frequent urination. With me being home more now we are spending more on heating and electricity, more on the allergy friendly foods we have to eat. We each have a mobile telephone so that we can get in touch with each other immediately should anything happen with any one of us because we have no other family. Activities that may cost £5 for a child to do normally, will cost us £60 because of the supervision and special environments the children each need. The aids and sensory items needed just for the children to be able to sit down and relax cost more than a simple blanket would. So when it comes to needing an advance payment for a motability car so that I can leave the house with my family and enjoy it without being totally exhausted before leaving the driveway of £5000 is way out of our league, despite what the paperwork that doesn’t even ask about outgoings may say.

The whole motability issue is another post alone.

We were able to find a quiet corner for us to sit and have our lunch, topped up with a few hot drinks from the cafe on site and free samples being handed out by a food delivery service for the elderly.

G coped extremely well using an app on her iPad which communicates for her, immediately getting over the hurdle of selective mutism and allowing her to ask questions, order food and chat freely to people. That was a huge achievement for her on the day and gave her something to focus on rather than the numbers of people present.

By the end of lunch we were all feeling that perhaps this wasn’t the right place for us, despite us all being disabled, it didn’t feel that the exhibitors were there with anything relevant. We had a lot of balloons, stress balls from a legal firm that didn’t deal with wills or power or attorney, leaflets and booklets from companies who had some relevance to us but we would never be using because of their costs, and paper flags from an accessible hotel that I had hoped would have brochures with them on the day, but instead had discounts available for bookings last month or this. I do want to go there, but with five of us in the family it is still very expensive and not something we can just decide to do on the spur of the moment.

Once we left and found the promised Starbucks (which stocked almond milk) we had all had enough so decided that was it for us. I was tempted to go next door to the dementia and care home show as they would have probably had more relevant items and advice for my current situation, but they were closing down at the time.

I am not sure if we will ever return to Naidex. I would definitely recommend it if you are looking to buy a new wheelchair and want to try different ones out, or if you want to go to any of the seminars on the day (impossible as a family), or if you have friends who are members of any of the charities who were there- there seemed to be a lot of groups who met up there regularly. If you have won the lottery and are looking to adapt your home for someone with disabilities then it is definately worth a visit and if they improved the availability of everyday aids then we would return and I would quite like to be able to go to some of the seminars, but as it is I think we will stick to the Kidz to Adultzzz exhibition that we attended the week before Naidex.

It would also have been beneficial to have more charities present and local services for people, and to consider that people with disabilities are all ages.