Bob B

Full time carer, volunteer for the MS Society, NHSE Peer Leader. Healthwatch volunteer, Arts & Minds Trustee, CSCI Community Ambassador - All views are my own.

[Bob B @StopMsChampion]

@PaulRidley5 I reached state pension age recently so the government decided that I’m no longer a carer. I wonder who will look after the person that I’ve cared for over the last 14 years!

[Linda Bamford (she/her) 🇪🇺🏴󠁧󠁢󠁳󠁣󠁴󠁿🌈👩‍🦽 @LindaBamford151]

Deliberately misleading post. Cars via Motability lease scheme are not free!

Disabled people who are rigorously assessed&qualify for high level PIP/ADP can choose to lease a car. Costs app £300 a month + advanced payment norm +£3-10k, they don’t get back. Stop the crap rhetoric!

[Mike O'Brien🏴󠁧󠁢󠁷󠁬󠁳󠁿#UnpaidCarerAssembly @Mikeo56977865]

When the Carer becomes the one in need of care

As many of you may already know, last week I had a bad fall that required a short stay in hospital to repair a fractured humerus and dislocated shoulder. I can’t fault the hospital staff at all as every single one of them was fabulous, from the porter who took me up to the ward right through to the surgical team who repaired the damage. However, once home after the surgery it became a different story. I reached out to social services on the Tuesday, explained the situation and asked for support. Well, dear reader, as I’m sure you can imagine, no support was forthcoming and I’m still waiting on a call from the duty social worker which will very likely come once the support is no longer needed.

So, I hear you ask, what happened next? We relied on the support of neighbours for a few days while I recovered to a point where I wasn’t in absolute agony every time I moved and then between my parents and I we worked up a plan where we can support each other until I’m fully recovered.

Local authorities and carers support services really do need to start building contingency plans into any care/carer support plan so then when accidents happen the contingency plan can be quickly activated instead of leaving families to struggle with no support.

[All Things Multiple Sclerosis @MulSclerosis]

Myelin repair is possible in humans | Metformin and bexarotene trial results announcement
https://t.co/FRX3iWGwUI

[Carers UK @CarersUK]

Thank you @EdwardJDavey for raising that thousands of unpaid carers are having to repay very substantial Carer’s Allowance overpayments to the @DWPgovuk at the first #PMQs today. Carers, who need and deserve better, urgently need to see reform of Carer’s Allowance.

[Jo Tunmer @JoTunmer]

Have you started painting in oils but would like to learn more? Come and join me on an 8 week course https://t.co/LDMZwEWf8k

[Jo Tunmer @JoTunmer]

Two new oil painting classes now available to book https://t.co/o66l9mF2V7

[Charlotte_Paddison @CAM_Paddison]

There are more than 5 million #Carers in England.
So how do 'carers' feature in different manifestos?

Interesting question that...

Mentions of 'carer'

LibDems = 29
Conservatives = 5
Labour = 0

Ironically, it's #CarersWeek2024

#ThinkCarer @CarersTrust @CarersUK @WeAreCarers

[Bob B @StopMsChampion]

I’ve been a carer for my wife for the past 15 years, diagnosed 26 years ago, over that time we have met many lovely people, PwMS, carers, MS Nurses, Neurologists, researchers and volunteers from the many charities, on @WorldMSDay I just want to say thank you for all your help.

[Disability Rights UK @DisRightsUK]

The £100 million Work and Health Programme, to help Disabled people get into work, will be scrapped

Meanwhile the PM orders Disabled and vulnerable people into work by cutting benefits

This Government has failed Disabled people

https://t.co/AL8TzkZrKW

[Jo Tunmer @JoTunmer]

Oil painting 8 week class for beginners and improvers https://t.co/ty9tq0P3GS

[iPhotography @iPhotographyCo]

We're love raising money for @mindsarts charity through every purchase of our Wellbeing for Photographers book 💜 Packed with advice, ideas and insights to help you become a confident, anxiety-free photographer 🌈

SUPPORT 🙏 https://t.co/ykozl6OFuP

[Bob B @StopMsChampion]

@shiftms @ElizaSspencer @SteveBarclay @mssocietyuk @MSTrust To just close the door on 250+ people is, in my opinion disgraceful. Some of the MS community in Fenland have asked why the NHS has abandoned them. Technically they haven’t but that’s how it feels.

[Bob B @StopMsChampion]

People living in the Fenland area of Cambridgeshire were informed yesterday that in 7 days time access to a specialist MS nurse has been withdrawn. All appointments cancelled and people affected by MS have been redirected to their GP. @SteveBarclay @shiftms @mssocietyuk @MSTrust

[Bob B @StopMsChampion]

@shiftms @ElizaSspencer @SteveBarclay @mssocietyuk @MSTrust I don’t think they are interested. The nurses do a difficult but essential job, overwhelmed by lack of funds and volume of people being diagnosed. Just closing the door on PwMS is unacceptable

[Bob B @StopMsChampion]

@JonGregg6 @SteveBarclay @shiftms @mssocietyuk @MSTrust Feels like it

[Bob B @StopMsChampion]

@PatriciaMunn604 @SteveBarclay @shiftms @mssocietyuk @MSTrust The nearest to us is 45 mins away but has changed to general Neuro therapy as they are struggling to make end meet. 250+ people with a diagnosis here!

[Bob B @StopMsChampion]

@Laurenlondoner @SteveBarclay @shiftms @mssocietyuk @MSTrust They couldn’t safely provide a service- whatever that means.

[Bob B @StopMsChampion]

As you are all aware most GP surgeries do not have much knowledge of living with MS and they have relied on specialist nurses to guide them as well as us.

Devastating news for someone living with a long term chronic condition.

[Bob B @StopMsChampion]

People living in the Fenland area of Cambridgeshire were informed yesterday that in 7 days time access to a specialist MS nurse has been withdrawn. All existing appointments cancelled and people affected by MS have been redirected to their already overstretched GP.